John's Journal

I've been away for a while been mostly on the Facebook page but wants to update my situation , as most know I had my MV and Tricuspid repair surgery on feb 20 now 6 mo later , I had an Echo yesterday and im back with Mild Mitral Valve Regurgitation , Im not happy and im disappointed with the Dr. who was suppose to do it in looking at the procedure notes it appears that the Fellow di the surgery , the notes also say that the valve was inspected post reair and it was fine , 3 days later I had my 1st echpo and there was a leak i was told it should improve as the heart mends well it hasn't im so disappointed to think I may have to do this again , has anyone had to go back in to re-repair a bad repair , let me know how you made out

back in Hospital I have pericardial effusion fluid around the heart as well as unknown. Viral infection, shortness of breath and chest pain especially when i take a deep breath. To say this sucks , im so frustrated i tell you These 2 years have chang

Unrealistic Expectations After OHS

This may get lengthy, but I wanted to share my thought and feelings with the group who will hopefully understand my thoughts ..
Ist off I'm 65 , I’ve had heart issue for many years primarily Afib since 1991 , I had mild Mitral Valve Regurgitation for the past few years in 2017 I was diagnosed with Prostate Cancer and did my selected treatment which concluded with Radiation which was completed in June of 2018. I had been having some shortness of breath, but it escalated to severe shortness of breath and heart pounding literally out of my chest, fast forward to Dec 10, 2018 and two echo’s later was diagnosed with severe Mitral valve Regurgitation, and Tricuspid regurgitation .

My Cardiologist said I needed OHS sooner than later , as you all know there are no other option , and referred me to a surgeon in NYC, being a veteran I have very few options but the surgeon they referred me to had 37 years of experience and specialized in Mitral Valve repairs. I met him and felt pretty confident after speaking to him. I know the VA Hospitals have a bad reputation but I have always had good service and care there , so after a TTE and cath they also discovered that one of my leaflet cordele had ruptured and this was the primary reason things went south so fast, they assured me after the surgery thigs would greatly improve and I’d be a new man. Ummmm ok

I can’t express enough to anyone the mental and physical stress of OHS, and what you endure pre and post-surgery it has changes my life in that regard, how I think how I feel , I worry about everything that is happening and might happen so im one of them, but to me I have just reason.

I am now 3 months post-surgery of my Mitral & Tricuspid repair , atrial appendage clipped , pacemaker lead severed , and a few other things done ,they could not fix my afib as the dr said there was quite a bit of scaring in my heart , while I am not huffing and puffing and my heart is not pounding out of my chest like prior ,I still feel really short of breath I actually think its gotten worse in the last few weeks, I also developed what they said were ocular migraines my eyes go out of focus and I get a headache a weird feeling to see things out of focus it doesn’t last long , or let you know when its coming but you know when it, I also had a foggy light headed feeling that has now mostly gone away thank God, my eyes at times feel like they o heavey I cant keep them open so I called the cardio and told here all of this and she said let do an echo I was worried something went wrong with the repairs , they did an Echo and they said I had faint to mild Mitral Valve Regurgitation but noting that would cause any of this so

Are you post OHS and dealing with weird things happening that didn’t happen before, are you like me and were hopefully that things would greatly improve I'm told be patient , I know this I'm only 3 months but I come to realize that having OHS is a life changing experience it is to me I live in my world not of pity me but , having to come to terms what I have been thru , these groups help immensely as I come to know I'm not alone some of us bounce back greatly and I'm jealous of all those I see lifting weights and looking good and I sympathize with those who are struggling with various post issues like me so that’s my story I'm not overly religious but I do pray that God , helps me get back on track I’ve been through a lot of medical issues past few years I just want a break so I can have my normal like again .
Thanks for reading
John

Welll it's 5+ Weeks post my OHS for Mitral , tricuspid, repair atrial appendage clip, I was told id be a new man well im still 64 , I was hoping all this shortness of breath and huffing and puffing would go away surprise its still here, I climb 6 steps and im out of breath, i have been doing my breathing and walking everyday, amd im still where I was before they cracked my chest open … so i know why I did all this .. but why if im back where i started. adding to it this foggy felling in my head now all the time and headaches. This is not what i was expecting but i guess they say its still only 5 weeks since. You kinda get fooled by seeing some of our brothers and sisters doing so well here hitting the gym , lifting weights and running . guess I wasn't on that list. Just want to feel better than i was before all this .

My last chest X-ray a few days ago i tried to tag what i could im not sure if the ring on the right next to the pacemaker is a annuloplasty or the clip for Left Atrial Appendage closure.

Hi everyone its been a while as i have been participating on the Facebook group I feel like im making progress i still get short of breath , and tired but im told its only 5 weeks hopefully ill start my Cardia Rehab soon and hope that helps, I found it Strang that after my surgery every time I talk to a Dr. I find out something new that happen during the surgery so i went on line i look at what they did as follows.

Mitral valve repair, reduction annuloplasty neochordae, Mitral ring B815747, 30mm, Tricuspid annuloplasty with implantation of anterior leaflet Ticuspid repair with implantation of 30 contour 3D tricuspid
annuloplasty band Exclusion and eliminiation of LA appendate with placement of Atricure clip Removal of thrombus mass ( ventricular lead)
Removal of intracardiac portion of Atrial pacing lead Closure of ASD

so that's what they actually did, im feeling ok but have not excertid myself at all in my 5 weeks I am now walking about 5-6000 steps on my fitbit just trying to get out and walk ill post a few images after this , but glad to be alive Dr said im doing great I told her i need to feel great.

Today is exactly 4 weeks post my OHS ... started to walk 30 min around the neighbourhood trying to work my recovery ..it has not been easy dealing with the mental and physical aspects of this all friday i see my cardio to see if i can start to drive and

Almost 3 weeks post OHS 2 valves repaired

Today is two weeks since I had my OHS , Mitral & Tricuspid Repair, my atrial appendage was clipped ,but they were unable to fix my afib as I have alof of scaring form previous attempts I kinda assumed this would be the case ..
So why do i almost feel worse than i did before . part of my right hand is now numb and weak when i asked them about it they said , it was probably because of how my arm was tied down during the surgery , and said it should go away in a few months Should I don’t like that word.
I don’t have any energy literally , and the lightheadedness I had prior to the Surgery is still here ,that was the one thig I was hoping would go away, it hasn’t , so what do I do all day not that I'm home not much I use my Incentive Spirometer pretty religiously, its cold outside here in NJ so I'm not going outside to walk or anything so I try to walk around my living room . I don’t have alto of pain from my sternotomy, but I'm being cautious, So am I expecting to much my cardiologist called yesterday and reminded me this is a major, Major operation and I need time and patience I know everyone is different but I was hoping like some I see here I would be improving and getting better and feeling like a new man (nope) . Im grateful to be alive and made it thru the operations , and hopefully in a few months ill feel much better but for today I feel empty and like S ……so I come here to share with those who have been where I have . hopefully im not alone in these feelings. Also having trouble keeping food down looks like after every meal i get dirreah anyone else have stomach issues.

Finally home after 8 days Mitral repair , Tricuspid repair, atrial clip yes very nice pic but ..im sore ,im tired im out of breath. blah its only been over a week im glad to be alive i just wanna start to feel better...thanks to ever

Going home soon and i know this has come up before has anyone have experience with heart hugger or any sternum protector or aid devices when im up to it i will make a good post this is hard and exhqustimg
Thanks john

Well i know why it takes so long to hear from some this is no joke they did my mitral tricuspid but not maze due to scaring ...im sitting here in afib unrefular ryrhum my heart is beatging ouf of my chest at times ..any ill be back whrn i can ...

Well i know why it takes so long to hear from some this is no joke they did my mitral tricuspid but not maze due to scaring ...im sitting here in afiv unrefular ryrhum my hear is bwatging ouf of my chest at times ..any ill be back whrn i can ...

My first situp made it to the revovery. side thank everyone for your love prayers and support.

Checked into Hospital tonight met some of team ...9am OHS Mitral & Tricuspid repairs or replace ...looking for prayers and well wishes from all Heart Warriors i got this will come back from recovery side thanks to all in advance for all ya help.

To my Heart Warrior family OK my OHS for a Mitral & tricuspid repair or replace is in two days Wed I go in tomorrow for the final pre test and stay they night my surgery is at 9AM now I'm feeling very anxious, scared and almost numb I want to be on the recovery side so i know it all went well the fear of the unknown is killing me…. how did you feel leading up to your surgery tell me im not alone....

DONT DO WHAT I"VE DONE PRE-OP

I've read to much, I've seen to many YouTube videos, I've dug to deep and I've obsessed about my OHS and now I've become a wreck, my surgery is Wed the 20th for Mitral, tricuspid, repair or replace and a Maze for afib, I've tried to gain strength form all the great success stories I read, I cheer everyone one, the statistics I see say the success of OHS is that 999/1000 are successful in todays world, so why am i so petrified and scared i keep saying i will be ok , and im planning for things to do the week after, but yet that what if creeps in my head, I want to be on the side of recovery and know it went well , i'll be ok but I've read and watched to many video's till it scared me … Yes do some research of your surgeon and your hospital be educated but don't read what you don't have to,

There are many great OHS surgeons and Hospitals , not just the two or three in the US that everyone thinks are the best , so don't read to much.... look at videos to help and find strength and inspiration form our follow Heart Warriors who have been there. .. sometimes i just need to say soem things out loud Ihave been on these boards since I found out i needed OHS and i hope after my recovery i can come and help others to better deal with the anxiety than i did.
John

I want to thank everyone who has responded to my many post and have made me feel better about the upcoming surgery. I think my main problem is this foggy lightheadedness that i feel I don't know if its part of my valve symptoms, stress , anxiety or if there is something else going on. my wife says tat stress and anxiety can bring on all kind of things , so that's where I am a week away form surgery this time next week I will be in recovery probably still sedated … I just want to feel like im normal . honestly im a zombie right now feeling this fog in my head like im exhausted and tired,. thanks for listening
John

For the past 3 or 4 weeks I have been feeling like shit, to be honest my wife has been an angel i been feeling light headed , or what i call foggy head , just not myself , tired and run down , cant believe that the Mitral & tricuspid regurgertation can just wear you out like this , im sure all the stress and anxiety in my body isn't helping either , I just hope at the end of the day I can get up after surgery and feel better , and know that with recovery I can win this battle. thanks sometimes you need to talk out loud. i do it often , need to get it off my chest , that i feel this bad , I think if my head were not so foggy i would feel better. my surgery is next wed the 20th I been having a cold so i hope this does not affect things

What If's ---- -And Why Me of OHS...
Sharing my Deep thoughts...….its worse in the Morning .

Are you still waiting for your OHS, mine will be in a few weeks moved up to Feb 20th and I'm not Handling this well at all , I have confidence in my Surgeon and his team That everting will be ok he has 37 years of experience he's a professor of Thoracic surgery at NYU so why worry, I envision waking up to being told it went great. But yet the what if keeps creeping into my head, I don’t think I'm alone in these Thoughts, I'm so happy to see so many in recovery here and doing well I keep saying that will be me But still it creeps into my head, I'm depressed , my head has been in this lightheadedness foggy feeling for the past week and I cant shake it free, you start to wonder is there something else wrong with me gee this really suck’s.
In December my primary care said you need to get a echo I think there is more to this shortness of breath 2 Echo’s later I was diagnosed with Severe Mitral Valve Regurgitation, Tricuspid Regurgitation not to mention I have had afib for as long as I can remember and have had a pacemaker. My question was how do I fix this , answered OHS. This is no other remedy for a leaky valve just like in plumbing. My world crumbled I thought I was just getting older and out of shape im 64 I have some emphysema but not a lot. There are no choices to make here either way the outcome of having or not having the operation is the same my biggest fear. I'm an obsessive person and it has literally taken over my thought process.
These group has helped me in gaining some confidence seeing so many successful people making me feel that it will be ok they do this all the time the death rate is very small , my Dr said people don’t die on the table, so why am I so scared. Well for those who have recovered you have already don't it I need to reach in here somewhere and gain some more confidence that it will be ok , visualize the success and try to move forward. Have faith that God has more for me to do. But they what if and why me’s, has taken me to places I shouldn’t go to. I'm writing this as I want to share with some of the folks here who feel the same as I'm and know I'm not and you are not alone I'm in there with you writing this helps me get it out and share it , hope you don’t mind me doing this .. my family I'm sure is already stressed enough so why not share with stranger who are dealing with the same issues…. I'm scared , I'm petrified, But ill be ok I just need to get to the recovery side. Ill ready the books and try to gain more confidence.

I know people don't like to read others doubts and fears but it helps sometimes to talk outloud.
John

Did anyone get a exercise bike to help with recovery just curious, its cold in the east nto sure will get out to walk much .

My Surgery has been moved up to Feb 20th I have been having sever symptoms lately i have been having what i call foggy head and borderline dizziness I cant stand this feeling like i have a cloud over my head did anyone else have this lightheadedness foggy feeling prior to there Valve surgery I have to admit all kinda of crazy things are going thru my head like do i have another problem or is this related I hate feeling like ...

My Surgery has been moved up to Feb 20th I have been having sever symptoms lately i have been having what i call foggy head and borderline dizziness I cant stand this feeling like i have a cloud over my head did anyone else have this lightheadedness foggy feeling prior to there Valve surgery I have to admit all kinda of crazy things are going thru my head like do i have another problem or is this related I hate feeling like ...

The Emotional Magic of This Group.
When I was 1st diagnosed with Mitral And tricuspid regurgitation and told the only solution was OHS, I felt my world ended and the mortality of an OHS operations was extremely scary in the few weeks in this group I have become more confident that everything will be ok, The people in this group pre and post surgery are compassionate, informing and supportive and while I'm still petrified and scared I have more confidence that i will come out ok. The information from patients here is invaluable while speaking to the Dr's and nurses is somewhat comforting , its those who are going thru the pre and post emotional rollercoaster that truly know. I wanna thank all those who are inspiring me from the recovery side ,that everything will be ok , and say keep coming back some of us really need you trailblazers to help get us thru this . And those like me waiting keep asking questions that will help you deal better with what's ahead so that we can be ones to inspire others.

Question for those on the recovery side of things , I know that you are definitely in pain from sternum being split in half for a few weeks , but does the Heart hurt maybe this is a stupid question but someone asked me . and I didn't have an answer, what other pain do you have from OHS.. thanks

Out of Curiosity , are the only heart Hospitals and Dr. listed here only ones that Advertise on the site. I don't see my Dr. or the hospital , NYU which is not ranked at the TOP but considered a top hospital.

QUESTION- For those who suffered form shortness of breath how did you cope prior to surgery with your everyday life and working, wondering if there were any exercise or things you would do to make it easier.

Am i the only one who comes back to see how some have made out with there surgery , to wonder how they are doing a few Heart Warriors went in this week and are still to appear I hope there surgeries went well they are recovering maybe don't have access to leave a message yet..

Well I had my TEE & Catherization yesterday , got tot the hospital as requested at 6:30 AM 8 patients later and 3:30 in the afternoon they finally took me for the TEE I was pretty frustrated and pissed to have waited so long but finally , meet the Dr and he staff who was really nice she explained everything to me in detail said tey come a long way since i last had it 20 years ago , she put an IV line in and went to work , the next i remember it was over and she said everything went well. guess they drugs really worked so I was Droggly happy if that's a word, the next I remember i was in the Cath lab on the table and they were doing the wrist Cath , I was awake so i thought, next i know it was over and they said all was well.. 2 hrs later my wife was coming to get me... I'm really happy how the day went except for the long wait it cound not have been a better experience they staff at the VA were nice gracious and caring , made it eazy and finding out everting went well was the cherry on top now i meet the Dr on wed to go over all the findings but thru the day when i said Dr Grossi was doing my surgery all i got were accolades of how he was the main man for valves and world renown so have to admit it has made me feel better , now mind yo I hat that I hve to do this but im glad that the people who will be responsible are highly thought of. Hope everyone's test goes as well as mind did... onward Heart Warriors.

Thinking Out Loud,
I hope this is ok here , If its a bit much ill delete it , Since I was diagnosed with my Valve issues, I have had a hard time coming to terms with this , I know im not alone in the why me sometimes self pity club, I know my shortness of breath and light headedness were getting progressively worse as I dealt with my prostate cancer last year. I was just dealing with it and concentrating on the cancer treatment , I kept thinking maybe it was a pulmonary issue well , 2 Echo's later its my Mitral valve Regurgitation as well as my Afib. and tricuspid leaking severely, Thursday I go for the TEE and Cath pro op test...
So now why is every little ache and chest pain an issue and magnified, not to mention the fear of the surgery. I’m a veteran and get my treatment at the VA hospital as there is no thoracic at my VA I was sent to NY so I don't get many options of where to go and who to do it. The surgeon I was assigned is from NYU who has 30 + years of experience and is a professor at the school and the head of thoracic at the VA so why am I worrying. Maybe because I am like everyone elseI think about my family and all the things I feel I still ave to do in life,.I do music for a living and constantly travel the world today I had to tell my agent I had to shut it down for at least March and April, my health is # 1 if I don't have it there isn't a gig in the world worth it .. My visit with the Surgeon was good and we decided we will do it March 11th , I have a two week tour to do in Australia and NZ , he said go do it , come back and we will do the surgery but still I worry anyway ,

im sorry if this is the wrong place for this . I just needed to talk out loud and apologize to my heart Warriors , but seeing all the success stories here gives me hope ill be one of the good ones. much love and prayers to all the Warriors.

Make Sure to Come Back... I was thinking today as I came here looking for updates When I was dealing with my Prostate cancer I noticed that when we are looking for help assistance and support we tend to be very active. In my short time here I have also noticed that once some people have had there surgery and are on the road to recovery they no longer visit. I would like to implore some of you who have had successful surgeries to please come back and help support those like me who are still to have there operations and are longing for support and encouragement, as you know this is a really big deal operation and the support many get here help them us get thru this . so please make sure to come back and help those who like you need help in the beginning.

Well its Christmas Eve Day and most of my day gets consumed with the thought of my future surgery whenever that may be as I don't see the surgeon till the 9th Jan ,its so easy to say don't think about it,. Burt since its a OHS the fear of not getting up, really is messing with my head. anyway just finding some time to share my thoughts with everyone here who understands these feelings , and wishing those who are in recovery the best of luck you've done it , and to those of us who are waiting and scared your not alone , I wish you and your families the best as we all wait for that day to come , i'm in there with you wishing it was all behind me and I was recovering till then I will try not to let it over consume my thoughts.

John

OK Heart Valve Family, Sorry for a repost but5 needed to add some more information to it.. Finally had a chance to speak to Dr Grossi this week about my case, and he said I need ,a mitral valve and tricuspid repair, as well as a possible maze to deal with my afib, he said after 20 years of having afib my heart has enlarged a bit causing the Miral to leak and it needs repair, I have had various ablations over the years as well as having a pace maker . He has almost 30 years of experience in OHS. I’m going to need the whole gambit of test which anyone who has had this is familiar with Jan 9th for most of the test and Jan 15th for the Cath test. and all the blood test , to say this is totally freaking me out is to put it mildly.

I told the receptions he souds like he’s changing his socks and she said he does surgery almost on a daily basis, and forgets that for the patients it’s a big deal . but there is always a risk of fatality ,they will not do robotic or MI as he explained I have multiple issues which are nor a good candidate for robotic...

I know I don’t have any options but to get the surgery . I’m so scared but i see so many here who have had them done with great success. I love seeing the pictures of people post there procedure and doing so well , I wish i could wake up and have this all behind me it will probably be a few months before I get it done unless he says otherwise when I finally go in to meet him but im going to use all the successes on here to help me get thru this....

Has anyone else had both valves repaired as well as a-fib arrhythmia dealt with during their surgery. I am now assuming that it will be a longer recovery period for me due to the complexity of my case . anyway thanks again and sorry for the many post, everyone tells me I'm so brave I just finished a bout for prostate cancer and this followed a few months behind I will need much support in the next few months to get thru this.

This may sound sliek a stupid question but post the surgery where is it most painful during the recovery I'm thinking does the heart feel pain like when you pull a muscle in your leg ??

And last but not least I don’t think it was smart to go watch some YouTube videos’ for the surgery
John

OK Heart Valve Family, I got a chance to speak to Dr Grossi this morning about my case, and he said I need , Mitral Valve and tricuspid repair and also dealing with my afib, he said after 20 years of afib my heart has enlarged a bit causing the Mitral to leak and it needs repair, HE has almost 30 years of experience in OHS. Im going to need the whole gambit of test which anyone who has had this is familiar with. TEE, Cath , Cat scans, Pulmonary function and all the blood test , to say this is totally freaking me out is to put it mildly ,
He has done surgery almost on a daily basis, but there is always a risk of fatality they will nto do robotic or MI as I have multiple issues which are nor a good candidate for robotic... I know I dont have any option but to get the surgery . Im so scared but i see so many here who have had them done with great success. I wish i could wake up and have this all behind me it will probable be a few months but im going to use all the successes on here to help me get thru this....
Has anyone else had both valves repaired and a-fib arrhythmia dealt with during there surgery I am now assuming that the traditional surgery i will get means it will be a longer recovery period for me. anyway thanks again all I will need much support in the nest few months to get thru this.

And last but not least how smart is it to go youtubeing looking at the operation , was probably nto a smart thing to do I guess..
John

Hello everyone my Name is John im 64 and live in NJ , I hope you are all as well as can be, I have arrived here in search of support and comfort form those who are like mem scared of the thought of OHS death petrifies me ... I battled Prostate Cancer earlier this year and just as i was feeling better and recovering after all the treatment this ,I had severe shortness of breath and constantly tired and sometimes get lightheaded , has most of the test done and thought i had some pulmonary issues and 2 weeks ago the ECHO reveled severe mitral valve regurgitation I knew something was wrong i could barley get up a flight of starts without huffing and puffing. and my legs were swelling up a bit. yesterday the Dr redid the ECHO himself and confirmed the diagnosis. And said you need this repaired. Being a Veteran adn no other medical insurance i don't have many options but i have to say i have always been happy with my care at the VA.. I live in New Jersey they said they will send me to NYU and a Dr called Eugene Grossi at NYU Langone .. and am waiting for my appointment to meet with him to discuss my case and I assume make an appointment for the surgery. I also have afib and i have a pacemaker to boot.

I travel extensively for my work and fly very often long haul flights. so for those with some pre op experience , i have a few questions how do you deal with the extreme shortness of breath are there any tricks to help make it more manageable and take less strain off the heart .
For me as im sure for most the mental dwelling and worrying is overwhelming to think og OHS i couldn't think of anything worse to worry about .
Thank you in advance to anyone who answers and shares in my struggle , mos tof us come here because were desperate for someone to tell us were goanna be ok. My wife and family are super supportive but if yu r like me you don't want to burden them with your stress. OHS makes you think of the worse things

John
John