This week marks the six year anniversary of my first cut (Tuesday). It's also my six month anniversary from my second cut(Friday). February is American Heart ...Read more
This week marks the six year anniversary of my first cut (Tuesday). It's also my six month anniversary from my second cut(Friday). February is American Heart Month so I am very on trend with my ticker timing I guess. A bit of trivia, my hair turned grey immediately after that first adventure. Time flies when you are having fun and don't have a central line in your neck?
Marie Myers Happy First Heart Adventure Anniversary! I agree that time does fly, with or without a central line.. ... Read more
Marie Myers Happy First Heart Adventure Anniversary! I agree that time does fly, with or without a central line...
Lilly Black Pat, congratulations on your 6th year! you are a couple of months after my 6th year! so great to hea ... Read more
Lilly Black Pat, congratulations on your 6th year! you are a couple of months after my 6th year! so great to hear, and I am so happy for you :) but I didn't realize you had a second cut.....how are you doing? I don't come to the site often anymore due to full time work.
Such a whirlwind, time is just zooming by. I said goodbye to my rehab team today, all 36 sessions complete. It's funny how much we bond with our caretakers ...Read more
Such a whirlwind, time is just zooming by. I said goodbye to my rehab team today, all 36 sessions complete. It's funny how much we bond with our caretakers during such intense times in our lives. The upate; the five month date came and went last week, I didn't even notice as I was too busy stepping down off Metoprolol, going to rehab and getting back into work. I'm officially a few pills down a day, back to work full time and ready to enjoy the heck out of this summer. My INR settled in nicely around 2.0 and with an ease that I am grateful for, and I just graduated to 3 week checks! Bonus is that my wafarin dose is very, very low due to the ON-X 1.5 - 2 recco. I don't have another test, appointment, doctor visit until 12/18/21. LIfe is good. For those starting, it's nothing you can't handle, for those in the middle or just out of OR, remember that your story changes every 12 hours. If you are completely miserable, look at the clock and focus on your reality changing in that time frame, you'll be amazed how much it does. This train of thought is what got me through 8 days (twice) of staring at the hospital wall, ruminating in my own thoughts. For those well on the journey, I'm glad to be back with you, I don't want to do this again;-)!!! Since I forgot my 5 month anniversary I am going to pre celebrate my 6 year anniversary coming up on 2/12 of my first cut. Find something to smile about today in all the crazy. Sometimes that's all we can control.
Started feeling crappy last Thursday afternoon, horrible headache and really bad sinus stuff. Thursday was also my first day back to work after the cut. My ...Read more
Started feeling crappy last Thursday afternoon, horrible headache and really bad sinus stuff. Thursday was also my first day back to work after the cut. My mind was like 'ok you got it somehow, let's go get tested.' - Went to rapid test clinic and they swabbed me on Saturday. Got the results that said "No on Covid but positive for Flu B." I ONLY go to rehab and quickly through the grocery store and still managed to pick up the flu early in the season. More fun is that I did get my flu shot two weeks ago, and doctor told me I should be glad I did. Thank goodness for Tamiflu, it kicked in like a dream on schedule at the 36 hour mark. Had to call in sick to work (already) this week and was booted out of rehab until I get a negative test. My year is comical in this pandemic. Flu A on Valentine's day, AVR redo surgery on 8/7, and now Flu B on 11/15. I'm looking forward to 2021 :-).
And just like that, I couldn't find a good reason or excuse to avoid going back to work. Dr. released me yesterday and today was a full day. My brain is mush. ...Read more
And just like that, I couldn't find a good reason or excuse to avoid going back to work. Dr. released me yesterday and today was a full day. My brain is mush. Thank goodness it's only a two day week:-)! Going to take a while to rewire all the synapses.
Marie Myers Congratulations on getting back to work! I know that milestone was an important one for me in getting ... Read more
Marie Myers Congratulations on getting back to work! I know that milestone was an important one for me in getting back to “normal”. I sure did take a nap when I got home that first day back, though...
Mike Tirrell This is great to hear Pat. I am glad to hear your recovery is progressing well. Can I ask how you a ... Read more
Mike Tirrell This is great to hear Pat. I am glad to hear your recovery is progressing well. Can I ask how you are doing regulating INR and how used to the valve "ticking" you are?
Pat Bluemel Thanks all! @Steven = nope I work a desk job, but it's high stress, my boss and team are being cool a ... Read more
Pat Bluemel Thanks all! @Steven = nope I work a desk job, but it's high stress, my boss and team are being cool about a slow ramp up. I am very grateful for that.
@Mike - I was regulating INR like a PRO until I messed it up last weekend with a wee too much wine (oops). My pharmas are starting to take me from 2.0-3.0 therapeutic to 1.5-2 this week. So I'll get tested Tuesday and see how that is going. Overall it's not hard to maintain it. The ticking fascinates me when I hear it, mostly when I eat chocolate which is weird.. I don't hate the ticking and have gotten quite used to it when it's present. I'd say I hear it once, maybe twice a day if that.
Pat Bluemel @Marie, I was in bed at 6:30, hoping to make it to 7:30 after Wheel of Fortune tonight!
Rita Savelis I hear you on the brain is mush! Take it easy until the synapses get rewired.
Mike Tirrell Pat, how much wine is too much? I like wine! I am hoping I would still be able to enjoy it with wha ... Read more
Mike Tirrell Pat, how much wine is too much? I like wine! I am hoping I would still be able to enjoy it with whatever valve choice I eventually make.
Pat Bluemel You can still enjoy it you just have to be consistent (with mechanical). I hadn't drank since surgery ... Read more
Pat Bluemel You can still enjoy it you just have to be consistent (with mechanical). I hadn't drank since surgery and decided to go for it all at once. Took my readings way off :-).
stephanie arnold hey, glad to see you're back in action. good to hear. welcome to "normal" just watch the wine, huh. a ... Read more
stephanie arnold hey, glad to see you're back in action. good to hear. welcome to "normal" just watch the wine, huh. and even on light duty, don't over stress. you have a great attitude which will help get you totally up and running.
I posted this on Facebook earlier this morning. Can't believe it's been three months.
Three Months!
Much like newborn humans, open heart patients count ...Read more
I posted this on Facebook earlier this morning. Can't believe it's been three months.
Three Months!
Much like newborn humans, open heart patients count recovery in days, weeks and then months. In our online groups we literally refer to day 1, 2, 3 out of surgery, as each day has significant healing or hurdles to overcome and those long days and weeks are seared into our brains for a long while. And while the days seem suspended in time, the months speed by. All this being said – I’m 3 months old today!
Three month milestones:
Beta Blockers were reduced by 50 mgs per day as my BP was too low (80/53 was a bit alarming to see on the bp machine). Still on a hella high dose that shocks heart people when I tell them, but going in the right direction.
Cardiac Rehab is going great. I’m pushing more - 1.4 on the bike today and I snuck up to 3.2mph on the treadmill while they weren’t watching.
Sleeping through the night mostly - not even comedy, when you go through this surgery, solid sleep goes away for weeks and months.
Multiple naps a day have now turned into none.
Two full months w/out an Afib run (this is huge, Afib sucks rocks as I've mentioned many times before) – gosh I hope I am not jinxing this.
Living dangerously and drinking one diet coke a week to test my caffeine tolerance since Afib doesn’t like anything w/ caffeine.
Now the real scoop in reflection – this redo surgery nonsense has been pretty tough. Much more difficult than my first go in 2015. Waking up from the surgery sucked. The lack of stamina, constant pain, Afib, cardiac depression and being a moody bugger sucked even more.
I think and hope corners are turning though. My feel good days are happening more than my low days, and my psych appointments are becoming boring, with more laughter and less tearful angst so there is much progress there. Life is turning from grey back to technicolor in my outlook and I’m not mad about that. I am forever grateful for an awesome employer with amazing benefits that has helped me through all of this. Not once, but now twice in five years. However, that pesky employer is knocking on my door to join the real world again here soon. Thoughts and prayers with that one, as my brain still hasn’t come back online. Happy Friday to all!
Marie Myers Great report! Sounds like you are coming along very well .
Susan Lynn Pat - Happy 3 month Anniversary! Sounds like you're doing great! Wishing you continued success with ... Read more
Susan Lynn Pat - Happy 3 month Anniversary! Sounds like you're doing great! Wishing you continued success with your recovery. Please keep us posted on your progress!
Rita Savelis Thanks for your honest well-written post. Here's to psych appointments with more laughter and less an ... Read more
Rita Savelis Thanks for your honest well-written post. Here's to psych appointments with more laughter and less angst. Hope your brain comes back online soon.... (Mine seems to go off and on 5 years later, after only one surgery).
Take care.
Lee Wright Happy 3 months, love your post and your metaphor to newborns in the beginning, so true! Really happy ... Read more
Lee Wright Happy 3 months, love your post and your metaphor to newborns in the beginning, so true! Really happy to hear you are feeling better emotionally, that is key!!
Hi Heart friends,
If any of you have suffered from cardiac depression any tips and tricks? I've got a doozy of a case of the blues and trying to shake them. ...Read more
Hi Heart friends,
If any of you have suffered from cardiac depression any tips and tricks? I've got a doozy of a case of the blues and trying to shake them. Steps I've taken: walking 40 minutes a day. Upping my Lexapro meds, sitting in the sun, chatting w/ my psychologist and I start cardiac rehab on 10/6. Any other tricks? So glad the sun has decided to stick around Seattle for a while or I'd be a mess with the rains.
Susan Lynn Pat - It sounds like you're doing everything right! Cardiac rehab will likely lift your spirits. ... Read more
Susan Lynn Pat - It sounds like you're doing everything right! Cardiac rehab will likely lift your spirits. I found that meeting other people, many of whom endured much more traumatizing events than I, created perspective about my own situation. The staff was also upbeat and positive - I felt energized after each session.
I would add one more activity to your comprehensive agenda - identify one thing to look forward to every day. Maybe it's journaling, trying a new restaurant or recipe, or calling a friend to chat. You can even include an update periodically to your fellow heart warriors on this site. Small changes can lead to big results. Best of luck, Pat.
Marie Myers It sounds like you are doing the right things. Keep in mind that Covid 19 has thrown a monkey wrench ... Read more
Marie Myers It sounds like you are doing the right things. Keep in mind that Covid 19 has thrown a monkey wrench into an already difficult situation of recovering from heart surgery. Add to that an election year, and it makes it All really hard. I would suggest limiting your news intake. I found that listening or reading the news can just really depress me lately, and I am 3 yrs post surgery! Hang in there!
Nancy W I also experienced low mood and found myself sleeping way too much. I did a lot of binge watching Ne ... Read more
Nancy W I also experienced low mood and found myself sleeping way too much. I did a lot of binge watching Netflix and found a few shows that took me out of my head. I also found that my blood pressure meds were creating extremely low readings - I am sure this impacted my mood also. Can’t hurt to talk to the cardiologist about your low mood. I am in week 3 of cardiac rehab and now am off all blood pressure meds. Here in Northern Ca, the sun has been shining and it’s not smoky at the moment. So many factors to account for mood changes, but this bumpy road appears to have a general upward trend. Hope your mood improves soon. Keep us updated❤️
Jeffrey Dyer Hey Pat...Yes, I had the blues, too...I walked, was in the sun...yes, psychologist...just try to be a ... Read more
Jeffrey Dyer Hey Pat...Yes, I had the blues, too...I walked, was in the sun...yes, psychologist...just try to be as active as you can...5000mg of vitamin D3 each day...and you can try taking 200 mg of L-Theanine. Helps a lot for me...
Barbara Wood Sorry to hear...I'd suggest Spontaneous Happiness by Andrew Weil & agree with Marie on taking a break ... Read more
Barbara Wood Sorry to hear...I'd suggest Spontaneous Happiness by Andrew Weil & agree with Marie on taking a break from the news! Also eating anti inflammatory & bringing flowers, plants into the house. Take care Pat.
Darrin Vohs Hi Pat, I can't provide much advice since I only was on the emotional rollercoaster for a little ove ... Read more
Darrin Vohs Hi Pat, I can't provide much advice since I only was on the emotional rollercoaster for a little over a week. I would suggest stopping watching the news if you are and I think the cardio rehab should give you a bump! I would definitely talk it over with your cardiologist as some medications can impact mood.
Nancy W Also, I just got results of blood work and I’m low on hemoglobin so just started iron supplement- I ... Read more
Nancy W Also, I just got results of blood work and I’m low on hemoglobin so just started iron supplement- I’m sure that this has impacted mood and energy level.
Lee Wright Also keep reminding yourself this is temporary, in the big scheme of life, this 6 months is just a bl ... Read more
Lee Wright Also keep reminding yourself this is temporary, in the big scheme of life, this 6 months is just a blip...helps me when I see everyone doing stuff...I tell myself I can wait 6 months to get to do all those things. But sometimes a good cry helps or very intense movies based on real life events, helps me put my situation in perspective. I watched Just Mercy before my surgery and that was a big perspective switch for me.
Hi Pat, I agree with Marie and Darrin, don’t watch the news. I pray a lot and make sure to stay in ... Read more
Hi Pat, I agree with Marie and Darrin, don’t watch the news. I pray a lot and make sure to stay in touch with family and friends even if it’s texting or calling. Listen to music and start preparing your bags to come to the desert for your cardiac rehab and a change of scenery. God bless you and send his Angels to comfort you. Blessings dear friend
Meredith Bray Hi Pat! I found that having something to look forward to really helped me stay on an even keel during ... Read more
Meredith Bray Hi Pat! I found that having something to look forward to really helped me stay on an even keel during recovery. I started planning a trip for about 4 months post-op. It was a family reunion, and someone else did the heavy planning, but I was able to research and plan our travel route to the cabin, as well as a few activities.
Oh....and stop watching the news! I know it's difficult to avoid, but it's possible. Even non-cardio patients should avoid the news! Hope you find something that works for you, you've got a great support group here, so keep coming back when you need us :)
Meredith
Clearwater, FL
Dan Baltazor We're a mess here in the PNW with the rains on a good day :) But, with that said, hang in there. Ri ... Read more
Dan Baltazor We're a mess here in the PNW with the rains on a good day :) But, with that said, hang in there. Ride this out. I also had some anxiety and a bit of depression during the months after my surgery. Our bodies go through a lot. Cardiac Rehab helped a lot with the physical and mental aspects of recovery.
Jared Takeshita Listening to some good music always seems to help put me in a better mood. Chatting with friends or ... Read more
Jared Takeshita Listening to some good music always seems to help put me in a better mood. Chatting with friends or even posting on forums like these help me as well. I try to think about the positives and not fixate on the negatives that bring me down. I also feel more down and depressed when I'm tired and not getting a lot of sleep or good sleep. My PCP suggested that I use a non habit forming sleep aid.
Pat Bluemel Thanks all for the inputs. I figured I am doing the best and everthing I can. A friend said it best, ... Read more
Pat Bluemel Thanks all for the inputs. I figured I am doing the best and everthing I can. A friend said it best, it's likely due to Covid and the world around me right now not being normal. I am usually fairly optimistic and motivated but I have nothing lately. It also might be my metoprolol dose of 200mgs. I am both wired and exhausted at the same time. Hoping MDs will drop it down next month at the 3 month mark. I am definitely avoiding the news a lot these days. Headed to the desert and start rehab next week 3x a week so I'm hoping that structure and routine will help shake this down int he dumps feeling. Thanks again for the thoughtful responses.
Maryann Gomez Cardiac rehab will help a lot. You will meet people after a few sessions and it becomes a great suppo ... Read more
Maryann Gomez Cardiac rehab will help a lot. You will meet people after a few sessions and it becomes a great support system.
Hey Pat I just read that you are a November baby like me. YEAH
stephanie arnold being a stress cadet and emotional normally, I still remember really being hard to get along with the ... Read more
stephanie arnold being a stress cadet and emotional normally, I still remember really being hard to get along with the 1st 3 months. every time John would goof with me,I'd take it literally and start bawling. my sensitivity issue,combined with post traumatic stress added to my version of cardio blues ie cardio basket case. just pulling out of it when I traded that for the death of my love of nearly 40 years. as for the news... it's too horrible. the fires,the cootie,the riots all make me want to crawl in a hole and pull it in after me. as Ana says, give it to God. He does help us with stuff that's beyond our ability. you want a good laugh when you feeling down. watch some old Monty Python skits on you tube..❤
Dean Marney Dude! Your honesty is so damn refreshing! I still suffer from it off and on. I figure it is jus ... Read more
Dean Marney Dude! Your honesty is so damn refreshing! I still suffer from it off and on. I figure it is just part of my experience. I have friends who tell me when I'm losing the mental game. I do daily pranayama and use "thank you" as my mantra in meditation. Working out and Zoom/Facetime are very important to me. Don't be hard on yourself. Statistically you are in good company! I remember sitting in my Cardiologist's office sobbing while describing the plot to La Boheme, the arias, Renee Fleming, Brahms Intermezzos and his complete look of WTF? Took Cymbalta till I couldn't stand it and now have several people in my life who get it and me. You aren't alone! I want the fires to stop, the virus to go away, and an end to the Trump rule. You are the best!
Dean Marney Oh! Reading Jean Shinoda Bolen's book, CLOSE TO THE BONE, changed me.
I've tried to talk to a couple friends about this topic but no one really gets it. So you all get to read/hear about it. First surgery I hated my incision, ...Read more
I've tried to talk to a couple friends about this topic but no one really gets it. So you all get to read/hear about it. First surgery I hated my incision, I wouldn't look at it if I could help it. It was angry, pronounced and took forever to heal, it even had some stitches pop out at the top near my neck at one point. That zipper zigged and zagged it's way up my chest in a haphazard way and I eventually just got used to it. I was none the wiser, I thought it was normal. It faded around the 3 year mark but was very noticeable always.
FFwd to my second surgery and it's a completely different story. My incision is healed in 6 weeks. At 7 weeks I was scab free. It's neat, tidy and it's like a precise work of art. My point with all these words, 5 years ago it has become apparent that whoever closed me up was in a hurry or didn't know or care about what they are doing. The remnants of my first scar are still somewhat visible and lie under the very meticulous work of my latest closer. This closer did an amazing job glueing/sewing me back up. Here is the weird part and why I am typing, my new incision has healed in a way that it isn't going to be noticeable like I am used to, and I feel like a punk even typing this. I didn't realize how attached I'd become to my original zipper. Now it looks like I am headed to a whisper of a zipper when I look in the mirror and am in both awe and angst over original vs. new. There's a heck of a lot of bigger issues I could be angsty about and I get that. I am very grateful that at this point this is all I have to be grumpy about. just thought I would jot this down for when I look back to this time when I was being a punk over a zipper.
Hi Pat, we are allowed to complaint if we want to. You are not a punk, you are a warrior and very dea ... Read more
Hi Pat, we are allowed to complaint if we want to. You are not a punk, you are a warrior and very dear to us all. You are in recovery and you are doing well and that’s a blessing. Keep up the good job. Be well and continued recovery. I will continue to pray for you. God bless you
Marie Myers Welcome to being human! Sometimes there is little rhyme or reason to the things we think and worry a ... Read more
Marie Myers Welcome to being human! Sometimes there is little rhyme or reason to the things we think and worry about. Glad you are doing well in The Big Picture...
Barbara Wood Ha ha... mine has completely faded away after 3 years & I kind of miss it too - our scars can be litt ... Read more
Barbara Wood Ha ha... mine has completely faded away after 3 years & I kind of miss it too - our scars can be little badges of courage to us I guess. Having done 2 open heart surgeries, you have something to be proud of, visible scar or not :). Continued good healing wishes!
Susan Lynn Pat - I agree with Ana! We are allowed to complain! I can see how you can miss something you see eve ... Read more
Susan Lynn Pat - I agree with Ana! We are allowed to complain! I can see how you can miss something you see every day, but you will soon get used to your new "look" and your former scar will become a distant memory. Remember, The Beatles said it best - "I know I'll never lose affection for people and THINGS that went before. I know I'll often stop and think about them." It's totally OK to think of your scar and your experience. https://www.youtube.com/watch?v=YBcdt6DsLQA
Provided to YouTube by Universal Music Group In My Life (Remastered 2009) · The Beatles Rubber Soul â 2009 Calderstone Productions Limited (a division of Uni...
Marie Myers Susan-great song and one of my very favorites! Thanks for posting it!
Pat Bluemel Thanks all for the responses and the music recco! Very thankful for this group!
Thomas Brusstar My scar has always been nice and clean, but at first it was red and noticeable. When others saw it ( ... Read more
Thomas Brusstar My scar has always been nice and clean, but at first it was red and noticeable. When others saw it (I'm not often bare-chested in public) I was kind of proud. I knew what I'd been through, and I didn't mind telling the story. Now mine is just about invisible 2 years later, and I kind of miss it, too!
stephanie arnold I loved the Beatles selection. so appropriate and also very nostalgic.
stephanie arnold the scar of survival... mine faded to a vertical line. not horrible but always a reminder. the weird ... Read more
stephanie arnold the scar of survival... mine faded to a vertical line. not horrible but always a reminder. the weird gathered up lump at the top went away. no biggy. I'm glad I made it.
Seattle has had the worst air quality on planet earth for a while now due to all the fires in the west. I haven't been able to get out and walk since last week. ...Read more
Seattle has had the worst air quality on planet earth for a while now due to all the fires in the west. I haven't been able to get out and walk since last week. The inversion of terrible smoke is supposed to last until this Thursday evening. The smoke headaches are brutal. Popping Tylenol like Tic Tacs. I'm usually fairly optimistic and not so grumpy, but being stuck inside and with little activity or the option of activity is starting to make me just a bit cranky. So this is my reminder to all y'all - get outside and walk today:-). Hoping that this Friday the air clears in honor of my 6 week anniversary, just in time for my sternal precautions to ease off!
Nancy W I so agree! If the air is clear and it’s not too inclement, get outside. Here in San Jose, it feel ... Read more
Nancy W I so agree! If the air is clear and it’s not too inclement, get outside. Here in San Jose, it feels like house arrest.
Darrin Vohs Living in Colorado we have wildfires most summers. We use HEPA air purifiers to remove the smoke ins ... Read more
Darrin Vohs Living in Colorado we have wildfires most summers. We use HEPA air purifiers to remove the smoke inside the house (in the bedroom and room we are in). They seem to make a big difference.
William Trankle Find a mall, get a ride with the air on recirc in the car, and walk circuits of the mall until you ge ... Read more
William Trankle Find a mall, get a ride with the air on recirc in the car, and walk circuits of the mall until you get your distance in. Moving around is super important even 6 weeks out. Of course, COVID 19 might make finding an open mall a bit of a challenge--oh the times we live in!
stephanie arnold me too. I holed up worse than with the covid cootie. finally, the air has cleared, 3days running. ahh ... Read more
stephanie arnold me too. I holed up worse than with the covid cootie. finally, the air has cleared, 3days running. ahhh...got on my bike again , as well as my tree project yesterday.
It took me two or three hard learned tries after my first surgery to learn the valuable lesson of patience and moderation. I completely overdid it yesterday ...Read more
It took me two or three hard learned tries after my first surgery to learn the valuable lesson of patience and moderation. I completely overdid it yesterday by a long shot. Costco, Home Depot, chores and chores. I was feeling great all day, felt awesome! By 4pm my body started to remind me that major surgery was just 4 weeks ago...Today, will be a couch day, I feel like dung. I even advised Jared of this a day or two ago!!! Reminder to those (AND PAT) at the beginning or just starting this process, it's a marathon and not a sprint. Thank goodness for 90 day Fiance' on TLC to pass the couch time!
William True Pat,
I think that some of us just aren’t wired with the ability to “take it easy”. I was sneak ... Read more
William True Pat,
I think that some of us just aren’t wired with the ability to “take it easy”. I was sneaking in workouts very soon after surgery. I have pushed the envelope to the point of exhaustion, fatigue and fainting. Some days I go until my chest literally hurts. When I was first discharged, I thought I would have this thing beat in a few weeks. I am now realizing that the road to recovery is measured in years. This has been the hardest lesson of my life.
Two days ago, I watched my 5-year-old daughter read for the very first time. That made the sacrifice worth it.
Good luck, and may God grant you patience in your recovery!
-Bill
Jared Takeshita Thanks for this, Pat. It’s easy to go crazy when you feel good. A lot of times I need to remind m ... Read more
Jared Takeshita Thanks for this, Pat. It’s easy to go crazy when you feel good. A lot of times I need to remind myself that I just went through a major surgery. I tried to teach my son how to ride and stand on a skateboard and fell. Won’t be doing that again any time soon.
Rose Madura As I always say, it's a journey. A long one...
stephanie arnold OMG! again, thanks to you guys on this forum, I realize that it was not my imagination. the first mo ... Read more
stephanie arnold OMG! again, thanks to you guys on this forum, I realize that it was not my imagination. the first month out from post op, I kept getting tired, had a couple episodes of double vision. I finally got the reality that this was different than getting over the flu or something. now on fourth month, feeling strong, but I notice I still need to budget my energy load. ( stress, physical work, exercise,creeping olds... )
stephanie arnold I thought the 5th month which is 2 days away would be... oh good. I'm done now. today I was pretty be ... Read more
stephanie arnold I thought the 5th month which is 2 days away would be... oh good. I'm done now. today I was pretty beat from yesterday's exciting hour or so of hard work. so today I just feefaddled around the house and had some serious book reading time. nope.. not done yet. it just takes so so long. that's what I hear everybody saying, so it's not my imagination. but, we are presumably cured of whatever bad valve and other weird rods thrown by our body's engine. as much as I'm still scared of doctors,I will be good and appreciate their expertise.
Attention - long ish post. - I posted something similar in 2015 if memory serves. Time becomes so odd for all of us during this process. It suspends and speeds ...Read more
Attention - long ish post. - I posted something similar in 2015 if memory serves. Time becomes so odd for all of us during this process. It suspends and speeds by all at the same time. There are times in the slammer (my word for hospital) that 5 minutes can seem like 2 years, but then you get home and weeks speed by like they are just an hour or two. It's been interesting to compare my two surgeries since they were relatively close in the continuum. I think I blocked some stuff out from last time, humans are good at forgetting pain and strife so I'm intentionally documenting the gnarly stuff to read back on in the future vs. the Pollyanna outlook I had from last time.
First up - The waiting is not the worst part. Truth is, the waiting is awful and anxiety inducing for sure, but it's truly not the worst part of this process. The twists, turns and troubleshooting post op are the worst parts. Afib that won't come back to sinus is a worst part, the fear of cardio version is a worst part. The constant fear that I am going to slip out of sinus rhythm is a worst part. The fact that I can't tolerate any heavy pain medication and am forced to Tylenol only on day 2 is a worst part. The list can go on, but needed to get that off my proverbial chest. I think the whole process is the worst part, just not bits or pieces and definitely not the waiting to go under. The important thing to remember is how I/we deal with all these worst parts in aggregate. I told several nurses and MDs the only thing I could control w/ all my twists and turns was my reaction and attitude. All that said, this go round was totally different than last. My St Jude's trifecta aortic valve had failed so badly they had to take it out in pieces. It basically disintegrated as they cut it out. This made me a high stroke risk as the calcification was severe and was sprinkled into my aorta as they cut, they vacuumed it out as best they could, but they honestly didn't and wouldn't know if I would stroke out until they woke me up. I was confused as I came to and thought it was 2009 for a while and messed up other details they asked so they were prepping me for stroke intervention. That was fun to learn when I was lucid:-).
Thankfully no stroke, just medication reaction.
Now for a quick pro and con list I have in my brain. PROS - I felt better almost immediately as my valve had failed so badly. Didn't need a ton of breathing exercises or care. My stamina was back on day 3 and I was doing laps and laps and laps. Even with a gnarly case of Afib. I also knew every single thing the nurses were doing, I gave them warning this wasn't my first go and to tell me to shut up if I was trying to do their job for them. They laughed and told me they were grateful I was so interactive and the could auto pilot with me. I knew what to ask for and when. Another PRO is that I knew what I needed to do to get out of the slammer. I lined up PT and OT immediately. I managed getting all my check marks done so that when it was time to check out I had done all I could. The care was astounding. Nurses, PAs, CRNAs, CNAS, Doctors are amazing people. They work so hard for us, they work so hard in general. I am in forever awe of them.
CONS - medicine, my body hates it. This was definitely a worst part. IV pain meds make me puke, most all of them. We found a kind of happy medium with Dilauded, but then, hallucinations. I was assured several times that spiders don't crawl on hospital ceilings until they decided to put me back on Tylenol....Another CON this time around is pain. I don't remember my sternum being so cranky last time. I hurt more in the chest. Could be that 5 years have gone by and I am older, but my sternum is reminding me it's there and is still pissed off. False union; it's forming again. Last time i could feel my sternum click and clack for months after, and it started again yesterday washing my hands. At least I know what it is this time. The cardiac blues. I definitely have them this time. My biggest CON and one that we all have to go through it the utter loss of dignity. All my medical friends have told me it's not a big deal but I am a very modest person, I don't like being exposed or people fiddling with anything below the belt. Heck, I hate even going shirtless. This was a challenge this time as I had VERY involved nurses. Citing my Afib as a risk they needed to be present for all bathroom activities. except for when I used the urinal in bed. I hated every minute of other bathroom trips. There was no amount of bribery or negotiation that would get me out of observation and surveillance when I went into the bathroom those first few days and I'll never forget it. Last surgery it was nothing like that.
Overall the Pros outweigh the Cons as I am alive and feeling pretty darn good most days. Oh and getting up on steady INR has proven to be fairly easy so far. I do have a bit of the cardiac blues as mentioned, trying to resolve those by walking and sitting in the sun here and there. I got my car keys back today and my first planned trip is...drumroll...My PCP to show off my zipper. How exciting is that to start the weekend??? Oh yah and today was my very last dose of Amiadorone, excited to have that stuff leaving my body. I'm so thankful for Adam and this group. I'm not alone on this journey and your support and kindness is a constant.
Mike Tirrell What a great post, Pat. I am sorry to hear about all of your struggles but glad that the PROs are ou ... Read more
Mike Tirrell What a great post, Pat. I am sorry to hear about all of your struggles but glad that the PROs are outweighing the CONs. I hope the CONs continue to be eliminated with each passing day and that you are able to return to normal ASAP. Best wishes.
Barbara Wood Such a good post! Comparing the first to the second surgery is interesting. I went through a long in ... Read more
Barbara Wood Such a good post! Comparing the first to the second surgery is interesting. I went through a long involved cancer treatment previous to my valve surgery & have done lots of comparisons of the two in my head - both were terrible in their own ways & both were affirmative & life changing as well. For me the waiting was actually the worst, but I anticipated surgery for a year before it happened. And I agree that afib is particularly horrible & scary, in many ways that was the worst part for me. And I'm glad you're off the amiodorone. Just for the record & maybe to ease the minds of those waiting for surgery, I never had any of the bathroom issues - no bedpans or nurses watching:). I was using a walker to get myself to the bathroom from the first day.
Anyway, this was a great post - thanks - and all best wishes as you go through recovery.
Susan Lynn Pat - Excellent post! Sorry to read the challenges you faced throughout the process and during your ... Read more
Susan Lynn Pat - Excellent post! Sorry to read the challenges you faced throughout the process and during your second time on this path. The fact that you can still identify pros speaks volumes about your optimism. It's so easy to get consumed by every part of OHS and I don't know how I would handle getting the news that the 'replacement needs a replacement.' I'm going to say, not as well as you did! The one thing I did learn is that every patient's experience seems to be unique. Your journey was far worse than most of us - you are officially the newest rock star on this site - please know, your words and perseverance are totally inspiring! Wishing you all the best with your new valve and remainder of your recovery. Please keep us posted on your progress!
Pat Bluemel Thanks All! @Barbara So true on the affirmation and life changing thoughts. And totally fair on the ... Read more
Pat Bluemel Thanks All! @Barbara So true on the affirmation and life changing thoughts. And totally fair on the bathroom thing and newbies. My first surgery I was left all alone and was totally fine with that. I was taken aback about how involved the nursing staff was monitoring this time, but my HR was spiking to 160-180 when I got out of bed with afib, so I understand the constant monitoring, but don't have to like it:-). I talked to a Dr friend and he told me that having a patient drop down and bust their head open is much worse on a nurse than having to watch someone in the bathroom. Another nurse told me that she'd rather clean up an accident in bed than blood and brains off the floor so that helped - a little. They all walked with me in the halls too until they got my Afib under control so it makes sense. @Susan yes as I look back - processing the news of the redo and that Wilbur was failing left me literally breathless, like gasping for reason. I processed really quickly, mainly because I didn't have time to marinate in it. I was asymptomatic until I wasn't and then it got very apparent it was time to go for it about 3 weeks prior. I am very hopeful this is my last OHS for a very long time, if ever:-).
Darrin Vohs Great post and very scary situation with your valve coming apart. I am glad you have come through it ... Read more
Darrin Vohs Great post and very scary situation with your valve coming apart. I am glad you have come through it and are well down the healing part. I also hope this is your last OHS forever!
Rose Madura Very informative post. I can relate to the afib issues. Glad you are off Amiodadrone. It's terrib ... Read more
Rose Madura Very informative post. I can relate to the afib issues. Glad you are off Amiodadrone. It's terrible. Best wishes for an uneventful recovery.
Jared Takeshita Great post, Pat. This insight is very helpful. Reading these types of stories, while scary at times ... Read more
Jared Takeshita Great post, Pat. This insight is very helpful. Reading these types of stories, while scary at times, de-mystifies everything and eases my mind. I hear you about the modesty stuff, but in the end, I just let it all be as free and comfortable as possible while I was there. I figured that nothing can be worse than having someone see you with a urinary catheter in that they have to check on. Glad to hear that you’re doing well.
stephanie arnold oh yeh, my biggest thrill in hospital was pottying by myself and wiping my own butt.
Lee Wright Thank you for sharing so much detail about it all, good and bad. I have been so focused on the surge ... Read more
Lee Wright Thank you for sharing so much detail about it all, good and bad. I have been so focused on the surgery itself and a few of the recent posts on this site have made me realize that the recovery is probably going to harder and I am now mentally preparing myself. Keep on going, sounds like you are doing great considering!
I'm on day 7 in the hospital. All was going well with progress until our dear friend Afib decided to swing by for a 3 day visit starting Sunday night. They ...Read more
I'm on day 7 in the hospital. All was going well with progress until our dear friend Afib decided to swing by for a 3 day visit starting Sunday night. They dumped gallons of amiodorone and metoprolol into my IVs but this case is/was pesky. On Wednesday they sent me down to be cardioverted and it worked, for now. Highlights - i feel awesome, I really feel great. Down to 4 tylenols a day. Not so highlights - I'm still GA and painkiller averse, waking up and 48 hours post op included a lot of vomiting, and were not fun - we will leave that there:-). Digging the new valve so far. Working like a champ. My INR is up to 1.9....it just needs to be a 2 for me to escape! So close!
Marie Myers Glad you are doing well enough to post. Congratulations on your new valve!
Darrin Vohs I hope mister Afib stays away! Glad you feel like posting and it seems you are ever so close to goi ... Read more
Darrin Vohs I hope mister Afib stays away! Glad you feel like posting and it seems you are ever so close to going home!!!! Congratulations on successfully getting the new valve
Rose Madura I had lots of afib and Aflutter issues for about six weeks. I hope yours are done. Best wishes. G ... Read more
Rose Madura I had lots of afib and Aflutter issues for about six weeks. I hope yours are done. Best wishes. Glad you feel better.
Barbara Wood Congrats & happy healing second time around! Afib stinks, hope you've seen the last of it!
Hey Pat, I have been thinking about you and am so glad you are on the mends with a little complicatio ... Read more
Hey Pat, I have been thinking about you and am so glad you are on the mends with a little complication but getting through. So proud of you! You will get better and thank you for posting, God bless you and continue to touch you with his healing hands. Keep up the good humor
Pat Bluemel Thanks All for the well wishes. So far so good on the Afib runs, last one was this last Thursday nigh ... Read more
Pat Bluemel Thanks All for the well wishes. So far so good on the Afib runs, last one was this last Thursday night. They have me way loaded up on metoprolol and amiloderone here at home trying to keep my HR pushed way down while my heart heals. I thought 50mgs of metop were a lot which I was on. Now I'm currently on 200. Just a wee bit tired from it.
Dan Baltazor Great to see your surgery went good and you got past some hurdles. Home is a great place to be now.
Deena Elani Welcome home, Pat. The hardest part is over!! We were all thinking of you😀
All ready to shower in my special soap this evening and mentally prepared to head in bright and early tomorrow (Tuesday) and get this moving....Not to be. Someone ...Read more
All ready to shower in my special soap this evening and mentally prepared to head in bright and early tomorrow (Tuesday) and get this moving....Not to be. Someone needed doctor more urgently than I do tomorrow. Date moved to Friday of this week. This same exact scenario occurred back in 2015 so there is no angst or anxiety. Oh and I get to get RE-Tested for COVID on Wednesday. That will be fun:-)!
Marie Myers Yet another blip on your radar... Glad you are taking it all in stride!
No worries Pat, you can handle it. Sorry for the delay but God’s plan is always perfect. Will keep ... Read more
No worries Pat, you can handle it. Sorry for the delay but God’s plan is always perfect. Will keep you in prayer
stephanie arnold I guess I was lucky to avoid all the apprehension and anticipation by being half dead and unaware unt ... Read more
stephanie arnold I guess I was lucky to avoid all the apprehension and anticipation by being half dead and unaware until I woke up with the job all done. you are one brave guy. God Bless you!
Lorraine Willmann Just joined and saw this. Vibes coming your way that it's over and you're on path to recovery now.
Deena Elani It’s over. Yay. Thinking of your healing...! A safe and fast one.
This time next week I hope they are yanking some drainage tubes (or have already yanked them) and I'm walking laps. Doctor tells me 7 days in, I have a goal ...Read more
This time next week I hope they are yanking some drainage tubes (or have already yanked them) and I'm walking laps. Doctor tells me 7 days in, I have a goal for 5. My valve has failed so much in the last two weeks that I can feel it every moment. I am actually ready to check in and get this going already. I dread stairs, I can't walk my dog around the block, and I can't work in my yard without gasping for air - it's driving me nuts. The one thing I am not looking forward to is a revisit of Afib. I asked Dr if I was going to have trouble with it and his response was "Oh Absolutely!" I didn't need to hear that:-). Countdown is on for me to become bionic!
Adam Pick Ha! No Eeek. More like Wooo-Whooo!!!! The wait is almost over. Another Ha! Love your use of the wo ... Read more
Adam Pick Ha! No Eeek. More like Wooo-Whooo!!!! The wait is almost over. Another Ha! Love your use of the word bionic. I was on the Peloton bike when an instructor saw my "HeartValveGuy" handle and called me "bionic". Check this out. You so got this Pat!!! https://www.youtube.com/watch?v=sXyLJv8ERl0
https://www.Heart-Valve-Surgery.com - What empowering message does Robin Arzon, a top Peloton instructor, have for patients that go through cardiac surgery t...
Pat Bluemel That's awesome Amazing bionic! Thanks Adam, I appreciate everything you do for all of us. You make th ... Read more
Pat Bluemel That's awesome Amazing bionic! Thanks Adam, I appreciate everything you do for all of us. You make these journeys so much easier.
Pat Bluemel I did tell you that I have been messed up all these years. Named my valve Wilbur thinking it was pig ... Read more
Pat Bluemel I did tell you that I have been messed up all these years. Named my valve Wilbur thinking it was pig all this time, only to learn from Dr. Burke Wilbur was bovine. At least I won't mess up the robot/bionic name;-).
Adam Pick @Pat Wha??? I didn't know that Wilbur was bovine. Unbelievable! Have you thought about a name for y ... Read more
Adam Pick @Pat Wha??? I didn't know that Wilbur was bovine. Unbelievable! Have you thought about a name for your new valve?
stephanie arnold I gotta look up the info card on my Edwards one. I still would have been happy with equine. boy, it's ... Read more
stephanie arnold I gotta look up the info card on my Edwards one. I still would have been happy with equine. boy, it's a blessing you're going in for your redo before you totally fall apart. hang in there and God Bless you!
Pat Bluemel @Adam - it's a very funny story. Me and details. I thought all this time he was a pig valve. I actual ... Read more
Pat Bluemel @Adam - it's a very funny story. Me and details. I thought all this time he was a pig valve. I actually stopped eating pork because of it. I haven't had bacon in over 5 years! So I have been be-bopping all this time calling my valve Wilbur, telling everyone he was pig. But Dr. Burke informed me this summer he's actually bovine, I was shook. The doctors just looked at me puzzled. Heck, I looked at me puzzled, how did I miss this detail? And yes, I have a name picked out, but am superstitious so I won't be announcing his/her bionic name until next week. From Annie the Aneurysm, to Wilbur the pig but actually a cow valve to....???
Pat Bluemel @stephanie, thanks! I agree. I'm actually ready to check in and get moving on this.
I stopped by UWMC today to sign consent forms (I thought 15 minutes in and out - tops). But it was the whole how'd yah do. Walked out 1.5 hours later. Feeling ...Read more
I stopped by UWMC today to sign consent forms (I thought 15 minutes in and out - tops). But it was the whole how'd yah do. Walked out 1.5 hours later. Feeling as good as I can about my pending date.
Signed papers, got my instructions, spirometer, (they have changed the design since my last, it looks even more barbaric)! Special soap, nose ointment for this coming Saturday night. Covid test set up for Sunday morning. Chatted w/ surgeon one last time and off they sent me for bloodwork - all done. One more call w/ pre anesthesia tomorrow morning and then I'll be sitting pretty for my grand reopening. I forget how easy they make this on you once you are swept up in the machine.
First off, thanks to every single person who replied, offered advice, helped me through this. My surgery date is two Tuesdays from today (EEEK)!!!! I'm not ...Read more
First off, thanks to every single person who replied, offered advice, helped me through this. My surgery date is two Tuesdays from today (EEEK)!!!! I'm not updating to post the date over there on the right rail quite yet. I'm odd that way as it looks too real. I called and broke up w/ Cleveland today. Once they were finally in touch they have been wonderful. However, the thought of travel amid this dumb pandemic was causing me a lot of stress. I'll be meeting (or re-meeting) the ol' sternum saw locally here in Seattle - where I had my first OHS, at least it's all familiar right? Going w/ the OnX mechanical for sure this go round, curious about hearing the tick tick tick. Hitting that phase of peace with the help of my friend Xanax here and there. Thanks again for all the input. Helped immensely.
Susan Lynn Pat - There are great cardiac surgeons all over the country - especially in a city like Seattle. If ... Read more
Susan Lynn Pat - There are great cardiac surgeons all over the country - especially in a city like Seattle. If you have greater peace of mind staying locally, especially during this crazy pandemic, then, by all means, skip the traveling. This isn't your first rodeo. Do what feels right - it will make all the difference going into your procedure and during recovery. Please keep us posted on your updates to your updates! Best of luck to you!
Alex Sigalov Hi Pat, good luck, and ticking gets less annoying as time goes by
Ben Landry Sending you all the good vibes Pat! Thank you for sharing your journey with us here.
stephanie arnold God, you're brave! if I feel like whining about my 3month long recovery process, I will instead, send ... Read more
stephanie arnold God, you're brave! if I feel like whining about my 3month long recovery process, I will instead, send good thoughts and prayers your way.
Troy Ainsworth I have an OnX, the ticking is not an issue. Sometimes you hear it, sometimes not. Sometimes I find it ... Read more
Troy Ainsworth I have an OnX, the ticking is not an issue. Sometimes you hear it, sometimes not. Sometimes I find it reassuring
Can someone just make this decision for me? I'd be grateful. Finally got my Cleveland Clinic consult and both surgeons are aligned in approach, I feel good ...Read more
Can someone just make this decision for me? I'd be grateful. Finally got my Cleveland Clinic consult and both surgeons are aligned in approach, I feel good about that. I really feel at ease with both surgeons and their style and their advice, I like that. I'm 99.89 percent sure I am going OnX mechanical over Ross or another tissue valve on their advice. I'm not at all aligned on where I am getting it done. I do have a date scheduled at University of Washington, they know my entire history, they've done all the testing to date. They got me through my first round. Cleveland's reputation proceeds itself and there are a ton of grateful fans here on this site who have advised me to go for it. For me it is coming down to the travel - two flights, layovers, the pandemic, being masked up and uncomfortable on the plane home - and being across the country for 15 or so days when UW is literally 15 blocks from my house. I appreciate all the past advice and apologize if I've missed a guestbook entry here or there. I'm a bit scattered. Any takers? Anyone just want to make this decision for me and I'll go from there???? Sheessh, this and the waiting are truly the hardest part.
Tracy Fallu Only you can make the decision; however, planes, trains, and automobiles to get to/from does not soun ... Read more
Tracy Fallu Only you can make the decision; however, planes, trains, and automobiles to get to/from does not sound appealing.
Diane Maher Take another objective re- look at your Seattle vs Cleveland list....I think you will confidently see ... Read more
Diane Maher Take another objective re- look at your Seattle vs Cleveland list....I think you will confidently see the answer to your question.😉. All the best❣️
Diane Maher Just noticed that the Texas Medical Assoc. has just released a Covid Risk Chart....Flying is listed i ... Read more
Diane Maher Just noticed that the Texas Medical Assoc. has just released a Covid Risk Chart....Flying is listed in the moderate - high risk category.
Herb Greenberg Hi Pat. I live in San Diego and trekked up to LA for the only nonstop from So-Cal to Cleveland. It wa ... Read more
Herb Greenberg Hi Pat. I live in San Diego and trekked up to LA for the only nonstop from So-Cal to Cleveland. It was everything it was cracked up to be and my recovery was uneventful and fast. I'm well back to 100%. Surgery was March 4 and we flew back on March 14, the day after things started closing down. At that time nobody was wearing masks. I do not know what I would have done given the current situation – especially if my wife couldn't be with me throughout, in the hospital. I might have stuck closer to home – possibly LA or SF. On the other hand, my wife is already convinced that when the time comes for valve #2 - assuming I outlive the valve - it'll be Cleveland. I would certainly talk to your CC surgeon about it. Best of luck with it.
Marie Myers I personally was so overwhelmed by the whole idea of open heart surgery that I did not want to travel ... Read more
Marie Myers I personally was so overwhelmed by the whole idea of open heart surgery that I did not want to travel far. But that is just me...It is a tough decision, I know.
Civita Fahey its so hard to decide, I was lucky to have some of the best hospitals in the country here in Boston, ... Read more
Civita Fahey its so hard to decide, I was lucky to have some of the best hospitals in the country here in Boston, but, as you said, planes, masks, layovers, etc. I don't know if I could have done that right after surgery. I was exhausted. Plus there is nothing like the comfort of your own home. but, go where you feel most comfortable, you can overcome the obstacles if you feel that Cleveland will be your best choice.. Good luck!
Ben Curtis I was asked about going to different hospital for my surgery, and for me the travel is not worth it. ... Read more
Ben Curtis I was asked about going to different hospital for my surgery, and for me the travel is not worth it. Knowing how uncomfortable travel is for me post surgery (of any type), I went with as close to home as possible.
Alex Sigalov Hi Pat, yeah possibly of catching Covid is not good right after the surgery as its a lung disease and ... Read more
Alex Sigalov Hi Pat, yeah possibly of catching Covid is not good right after the surgery as its a lung disease and ur lung capacity is diminished after surgery; i had mine done locally and i live 30min drive from NYC; my surgen was highly recommended so i did not even bother going to NYC and this was pre Covid19. If ur just having simple valve replacement with On-X, i think its ok to stay local if its Ross or there are more complication then just replacing the valve I would then consider going to CC
Pat Bluemel As always, thanks all for the thoughts and feedback. I've been pretty consistent at staying close to ... Read more
Pat Bluemel As always, thanks all for the thoughts and feedback. I've been pretty consistent at staying close to home in my thoughts today so I think I'm trending staying on this coast. Until tomorrow..
Bradley Dunn I am from Augusta, GA and didn't want to fly after surgery but knew I wanted to go to Cleveland. The ... Read more
Bradley Dunn I am from Augusta, GA and didn't want to fly after surgery but knew I wanted to go to Cleveland. The idea of a bunch of people around me when I am healthy doesn't sound good - and after surgery I knew it would be worse. I ended up driving both ways from Augusta to Cleveland (I was a passenger on the way home)... So I get it is a hard decision.
I would almost consider flying there and driving back over 3-4 days. They both sound really bad to me.. but the idea of being at the best cardiac hospital in the seems like the best option to me.
Looking for advice from those who know how I am feeling. I think I know my answer and have settled, but much like my first go round, I change my mind on the ...Read more
Looking for advice from those who know how I am feeling. I think I know my answer and have settled, but much like my first go round, I change my mind on the daily it seems. My bio AV that was installed back in '15 has failed. I had mentally accepted that this round I was going on low treatment OnX but then my surgeon recommended a Ross procedure, using my pulmonary valve in the AV position, and a cadaver valve in the PV position. This blew up my whole plan in my brain pondering life w/out wafarin, but friends and family remind me that the mechanical valve USUALLY means just that one surgery. Where as the Ross would wear out and require another at some point. Another exciting possibility is that my surgeon is going to throw me into an Eloquis trial for my OnX..Any advice is appreciated. I'm not putting my date up on the board yet (much like last time) as it makes it too real. But I'm on the weeks countdown (EEK). Any thoughts on this late breaking quandary are appreciated. Still waiting on Cleveland Clinic to call me back on my second opinion (it's been two weeks)...
Alex Sigalov Hi Pat, i am on OnX got it six months ago at 39, Ross is also an option; how old r u?
Pat Bluemel Thanks Alex, I am 47, I just worry my body will reject another tissue valve no matter what type, it's ... Read more
Pat Bluemel Thanks Alex, I am 47, I just worry my body will reject another tissue valve no matter what type, it's such a quandry.
Alex Sigalov i would just go with OnX and not even think twice about it. Clicking could be anoing at time but u ge ... Read more
Alex Sigalov i would just go with OnX and not even think twice about it. Clicking could be anoing at time but u get used to it over time. I take my INR level at home monitor now oce a week and range 1.5 to 1.7. I don't notice that my bleeding has gotten any worse then before surgery and ive been to the dentist. Let me know if u have any questions
Adam Pick Hi Pat, So sorry to hear about what you're going through. I can only imagine how badly you want all ... Read more
Adam Pick Hi Pat, So sorry to hear about what you're going through. I can only imagine how badly you want all of this in your "rear-view mirror".
So you know, I had a Ross Procedure 14 years ago. I've had no problems since. (Knock on wood. Fingers, eyes, toes crossed that continues.)
However, that Proact Xa trial is really interesting. I'm hoping that we will be covering that clinical trial shortly.
In the end, as you know, this is a personal choice that requires, at some point, a leap of faith. As we have all come to learn together in this community, there is no "perfect valve" just yet.
Go with your gut and let it guide you to the right choice for you. I'm here if you need anything. Adam
Jennifer Tabor I totally understand! I’m 47, and I am ready for a re-do due to stenosis of a St. Jude Trifecta. I ... Read more
Jennifer Tabor I totally understand! I’m 47, and I am ready for a re-do due to stenosis of a St. Jude Trifecta. I have a small aneurysm again as well. I had a great experience at Vanderbilt last time, but I was strongly encouraged to go mechanical and I decided that it was not the best choice for me, with five active children. After research, I decided that I really want to try the Ross Procedure this time, and went last week to the Cleveland Clinic. They were phenomenal, and my doctor, Christine Jellis, feels that I have 6 months or more left on my valve. I’m sure you will do great either route you take, but it might be worth hearing what the CC says to help you decide. Best of luck!
Sean Parker Have you considered a TAVR valve to sit inside your failing Trifecta valve? This valve-in-valve proc ... Read more
Sean Parker Have you considered a TAVR valve to sit inside your failing Trifecta valve? This valve-in-valve procedure is being done and would give you a fix without having to do open heart again. The studies have been really good, even on intermediate risk patients. Seems like it would buy you some time until the Proact Xa trial is finished or something even better comes out.
Pat Bluemel @Adam, thank you, I'll keep y'all updated. I forgot the torment of this decision for sure. I'll keep ... Read more
Pat Bluemel @Adam, thank you, I'll keep y'all updated. I forgot the torment of this decision for sure. I'll keep you updated. I have a couple more questions for my surgeon around the study as well. I'll keep you updated on where I land with that as well. Thank you for all you do for us. Immeasurable support.
Pat Bluemel @Jennifer, I am so very sorry you are in the same boat as I am. To hell with St. Jude Trifecta I say: ... Read more
Pat Bluemel @Jennifer, I am so very sorry you are in the same boat as I am. To hell with St. Jude Trifecta I say:-). I'm still waiting back from CC, I've only heard great things about them, but am not having the best experience navigating their intake. I met with them 6/15 for consult, and am still waiting on a call from a doctor (I bugged them again Tuesday this week).
Pat Bluemel @Sean, I did ask about TAVR and my surgeon said we could definitely try and do it, but only as a last ... Read more
Pat Bluemel @Sean, I did ask about TAVR and my surgeon said we could definitely try and do it, but only as a last resort - my age and level of activity would only buy me a couple years with yet another bio tissue valve that my body would likely reject. It's ironic, I went w/ this St Jude valve believing TAVR would be there for me when it failed (I was banking on 10/12 years). St Jude had other plans for that.
Sean Parker @Pat, I understand. Seems like your chemistry may be a better fit for mechanical. Especially if the ... Read more
Sean Parker @Pat, I understand. Seems like your chemistry may be a better fit for mechanical. Especially if the Eliquis trial works out! Is there any downside in doing the TAVR for the short term? I saw that they're even going for low-risk indication now... https://www.onlinejacc.org/content/75/10/1208
Jennifer Tabor I’m sorry about your wait! I was not in as much of a hurry, so my experience was different. I’m g ... Read more
Jennifer Tabor I’m sorry about your wait! I was not in as much of a hurry, so my experience was different. I’m glad you are checking back in with them, sometimes ya gotta be the “squeaky wheel”! 😊 Keep us posted!
William Trankle Had a similar experience when my porcine valve calcified after just under 5 years. For my third AVR ... Read more
William Trankle Had a similar experience when my porcine valve calcified after just under 5 years. For my third AVR surgery, I wanted it to be my last--so I went with the OnX. I was trying to get into a trial where they were evaluating Plavix in place of warfarin, but they fortuitously discovered I had a clotting disorder. While that made me ineligible for the trial, it did let us know that I would need more aggressive coagulation therapy. My OnX has been clicking away for more than 6.5 years, and I highly recommend it--warfarin is not the end of the world it's advertised as. Trust me, that third surgery is a bitch, and if you can avoid it I would advise you to do so.
Pat Bluemel @Sean, I'll ask CC if they ever get back to me, of course I'd love TAVR, I just don't want to keep fi ... Read more
Pat Bluemel @Sean, I'll ask CC if they ever get back to me, of course I'd love TAVR, I just don't want to keep fiddling with my heart and want it over with. TAVR guarantees yet another procedure my future for sure. My timing is always just a smidge off.
Pat Bluemel @Jennifer - yep, will call tomorrow and make more noise if I haven't heard back. My diagnosis is sev ... Read more
Pat Bluemel @Jennifer - yep, will call tomorrow and make more noise if I haven't heard back. My diagnosis is severe and I relayed that, so I wait. Just glad I am mostly asymptomatic while I wait.
Pat Bluemel @William, thank you that is my thought (at this hour:-).
Pat Bluemel @ Alex, I swear I responded but thank you, again your mindset is mine, at this moment in time. One an ... Read more
Pat Bluemel @ Alex, I swear I responded but thank you, again your mindset is mine, at this moment in time. One and done is what i keep thinking. Warfarin isn't all that bad. I tolerated it well, unless I had too much wine by accident and my numbers went wonky.
Damian Kudelka Pat, I have thought about this a lot. Its better if we talk over the phone. But in brief I had Ross ... Read more
Damian Kudelka Pat, I have thought about this a lot. Its better if we talk over the phone. But in brief I had Ross in 2015 and needed a re-op in 2018 to replace the Pulmonary valve. I, we all have positive bias decision making with surgery. We look at Ross positive outcomes and think “that could be me” but we forget there are a non-trivial percentage of folks that have complications with Ross. Me and others. So on reflection I wouldn’t have chosen Ross. I would have went as minimally invasive one valve surgery as possible and then when it fails i would try minimally invasive again. hopefully trans catheter, but if not they keyhole or whatever. the point is get additional time so in the future minimally invasive will improve. Ross gives you two valve issues and there is no certainty all will be well like it was for Adam pick. So its a risk to choose Ross and of course its a longer procedure more scarring meaning more potential post-op complications. No good.
LINDA ROBERTS I know in time you will make the right decision for yourself. I am so sorry you have to go through t ... Read more
LINDA ROBERTS I know in time you will make the right decision for yourself. I am so sorry you have to go through this again.
Pat Bluemel @Damian, thank you!!! I actually came to this decision for myself this weekend. Why fiddle with two v ... Read more
Pat Bluemel @Damian, thank you!!! I actually came to this decision for myself this weekend. Why fiddle with two valves while only one is giving my trouble?
Pat Bluemel @Linda, thanks I think I am getting there and to my point of peace. Only a few more weeks to change m ... Read more
Pat Bluemel @Linda, thanks I think I am getting there and to my point of peace. Only a few more weeks to change my mind:-).
Deena Elani Yep, compare the surgeons and hospitals stats on survival, complications, strokes. Though looks like ... Read more
Deena Elani Yep, compare the surgeons and hospitals stats on survival, complications, strokes. Though looks like your mind and heart made the decision already. Thank god the stats are so good now-a-days😎
Bradley Dunn On-X all the way. For starters, they will give you a ring you can wear on your finger with the same ... Read more
Bradley Dunn On-X all the way. For starters, they will give you a ring you can wear on your finger with the same material (carbon) from the valve.
Warfarin doesn't effect me at all. I coach little league baseball and play sports all the time with my kids. I also drink beer and some bourbon (not while coaching kids :) )
The only thing is my chest itches like no other.. I love showering and washing it.. I feel like a dog getting its belly rubbed. I also hear the clicking from time to time which sometimes bothers me..
I am approaching 2 years Aug 28th.
Pat Bluemel @Bradley thanks for all this, I missed your reply. I've settled on OnX, and glad to hear I'll be able ... Read more
Pat Bluemel @Bradley thanks for all this, I missed your reply. I've settled on OnX, and glad to hear I'll be able to get my drinking shoes back on even w/ wafarin!
Got all my scan results back yesterday and chatted w/ Drs via tele - and it's time for the do over:-(
Going through all the rollercoaster emotions just like ...Read more
Got all my scan results back yesterday and chatted w/ Drs via tele - and it's time for the do over:-(
Going through all the rollercoaster emotions just like the first go round. My moderate aortic stenosis has progressed to severe in a very short time. My surgery status is urgent, yet not quiet emergent so momentum will be picking up quickly and I'll be back on the count down calendar over there on the right sometime in the next couple of months. It goes without saying I am not a fan of the St. Jude Trifecta valve, it lasted just over 5 years and didn't agree with me as it failed so quickly. That said, my cardiologist is adamantly against going bio again, and I have to say I agree. Researching low dose warfarin valves for this second go round. I was pondering Cleveland Clinic, however the travel and Covid etc is daunting after much thought, so I'll likely be sticking around Seattle. If any PNW folks love their surgeon let me know as mine has retired. I'm meeting with his replacement this week but always like to entertain a second opinion. Off we go?!?
Marie Myers Sorry to hear about your Upcoming too-soon redo. Early bio valve failure is one of those things that ... Read more
Marie Myers Sorry to hear about your Upcoming too-soon redo. Early bio valve failure is one of those things that lurk in the back of my mind, since I also picked a tissue valve 3 years ago. Time will tell, I guess. Best wishes for a smooth surgery and recovery!
Kirk Bepler Pat - Sorry to hear about your replacement valve surgery, since I myself did a tissue valve 2 years a ... Read more
Kirk Bepler Pat - Sorry to hear about your replacement valve surgery, since I myself did a tissue valve 2 years ago for the Mitral valve it is something you think about now and again as Marie stated. Here's to a smooth surgery and fast recovery!
Carlos Banuelos Sorry to hear you need another replacement. I’m not quite a year in since my avr, but so far I wou ... Read more
Carlos Banuelos Sorry to hear you need another replacement. I’m not quite a year in since my avr, but so far I would highly recommend the On-x valve. No issues to date and I’m back to doing all the sports I was doing before surgery except with more energy. Managing INR/warfarin dosage has been much easier than I expected as well. I went to Cleveland Clinic for the procedure and would not hesitate going again even during covid19 pandemic, especially for a reoperation. Happy to chat if you have questions or want to discuss.
Pat Bluemel I signed up for myconsult today at CC for a second opinion Carlos, thanks for the recommend.
Alex Sigalov OnX mechanical is a good choice, inr range 1.5-2 for Aortic position
Civita Fahey I think we all that chose a tissue always wonder when the day will come. I wish you luck.. My surgeon ... Read more
Civita Fahey I think we all that chose a tissue always wonder when the day will come. I wish you luck.. My surgeon in Boston had said if I chose a mechanical it would have been an On X as it takes less Coumadin and will soon be just aspirin ( I believe its already that in the UK ). Best of luck and keep us posted.
Pat Bluemel On-X or the like is all I am focusing on now so thank Alex and Civita. I've been on Coumadin for 6 m ... Read more
Pat Bluemel On-X or the like is all I am focusing on now so thank Alex and Civita. I've been on Coumadin for 6 months as a test. I don't hate it, I'm just not wired with consistency to be a pro at it. I FINALLY got leveled out at 2.0 last week after 6 months and then they took me off it as their test of my tolerance was done and it didn't help w/ my valve calcification. Also going to inquire about TAVR as a placeholder or if even that's a thing for my age group. I know UW here in Seattle has been doing some outside of the original parameters of older age etc. Thanks again!
Gail Gustafson You may also want to look at the Aortic Valve Reconstruction, Osaka procedure.
Finally (FINALLY) was able to get in and get my March echo done at UW yesterday (just a few months late :-). Thanks Covid. I'll get results today via phone ...Read more
Finally (FINALLY) was able to get in and get my March echo done at UW yesterday (just a few months late :-). Thanks Covid. I'll get results today via phone and we will figure out next steps, if it's more watchful waiting or time to surgeon shop. I've adjusted begrudgingly to taking jantoven, I don't like it, but I don't hate it. I gleefully graduated to 4 week INR checks (after 6 months of trying to get stable and under 2.0) last week. I've been going every week or every other week for this long. Didn't dig that part. No more blood draws for 4 weeks is worthy of celebration. I'm pondering doing OHS #2 at CC and would very much appreciate any advice folks have. Is it really as easy as signing up online, paying their 2nd opinion fee and you get swooped up and taken through their process? I've only heard great things, and even better things about re-operations so I want to cover all avenues this go round.
john roland I got my new bovine valve and aneurism repair on March 25, 2020. Dr. Roselli , of CC did the surgery. ... Read more
john roland I got my new bovine valve and aneurism repair on March 25, 2020. Dr. Roselli , of CC did the surgery. I couldn't be more pleased with the whole process. I call CC the" well oiled machine". I know I am partial to CC, but everyone from the front door to the door of the OR were exceptional. Good luck
Shannon Gray I second John. Forever grateful, even after I had complications, of the care I received.
Hi Heart friends. Been a while since I've checked in. Went and got Wilbur checked out and he is calcifying like a champ! Total bummer, but looks like we are ...Read more
Hi Heart friends. Been a while since I've checked in. Went and got Wilbur checked out and he is calcifying like a champ! Total bummer, but looks like we are in range of a redo surgery next year. Next check is March 24th, I'm considered to be moderate aortic stenosis, moving into severe. Some days I feel like crap, others I feel ok. Sometimes I am out of breath, other times I breathe with no trouble. Cardiologist took two courses of action. 1 - ordered me onto a 30 day portable EKG monitor to record my rhythms. It's annoying but not too bad. 2 - She wanted to experiment with Wafarin for two reasons. 1- to see if I can tolerate it in case I choose a mechanical valve next go round, and 2 - to see if it might improve or slow the calcifying process, in case there is a thrombus hiding on a leaflet that isn't picked up on CT.
So far I am not digging the Wafarin, I am on 5mgs a day, two INR checks a week and my arms have track marks that look like I am an addict, started bruising quickly as I dosed up. I’ve cut myself twice already (I’m a clutz). I'm also told it's all in my head but I really don't care for the way I am feeling. Totally 'tinny' and 'green.' Has anyone else had this happen w/ Wafarin? I just feel off. I’m going to stick with it, but this little experiment is proving out that I think I’ll be choosing another bio valve when the time comes (Inspiris) or a low coag mechacnical (On-X). It’s quite ironic that I went with a bio St Jude Trifecta valve to avoid blood thinner care and here I am on it regardless.
Any advice for the Wafarin blues is appreciated;-).
Robert Osmachenko Wow! I remember you from the time I had surgery in 2014. Now, you are going through this again! I ... Read more
Robert Osmachenko Wow! I remember you from the time I had surgery in 2014. Now, you are going through this again! I’m sorry to hear that you are accumulating Ca on your valve and why is it that you presenting this way? I can’t speak for the effects of warfarin because it is different for everyone but I wonder if it is diet related or if it is complicated by other medications?
Civita Fahey sorry to hear you have to go through this so early. .but you seem to be taking it like a Champ. hope ... Read more
Civita Fahey sorry to hear you have to go through this so early. .but you seem to be taking it like a Champ. hopefully, you can prolong the inevitable a bit longer when you see your doc in March.. my prayers are with you.
Pat Bluemel Hey Robert, they say sometimes our bodies just grow calcium and reject the valves. I did google my va ... Read more
Pat Bluemel Hey Robert, they say sometimes our bodies just grow calcium and reject the valves. I did google my valve and there is an actual calcification study going on with this particular valve, and so it goes. As for the Wafarin, I don't get it, might be in my head, I am trying to follow the eating (and drinking) rules. My body just doesn't like most meds.
Catie B Oh, man! Pat my heart goes out to you! I'm in a very similar situation, though my surgery was late 20 ... Read more
Catie B Oh, man! Pat my heart goes out to you! I'm in a very similar situation, though my surgery was late 2016--bovine valve, aortic aneurysm/root replacements. I have issues with meds too. Gosh, I hope things get better for you with the warfarin and that you'll keep us posted.
Pat Bluemel Thank you all! I'm cautiously up on a plane with an INR of 2.3 today! Graduated to one blood draw a ... Read more
Pat Bluemel Thank you all! I'm cautiously up on a plane with an INR of 2.3 today! Graduated to one blood draw a week, at 5mgs a day. Realized the icky feeling and headaches was actually a cold/sinus thing over the last week. I actually feel really good today!
Chris Calhoun I do not find the Warfarin to be a big deal - but I take pills - no injections - I wish you all the ... Read more
Chris Calhoun I do not find the Warfarin to be a big deal - but I take pills - no injections - I wish you all the best