AVR+MVR+aortic graft replacement story

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FelixC

Member
Joined
May 5, 2018
Messages
7
Location
Home is in Louisville, KY, USA. Currently working
Hello, dear forum members! First of all, I’d like to thank all the senior members for their very insightful info on this site. I just found this forum 6 weeks after my surgery that included Aortal and Mitral valve mechanical replacement plus the Dacron Graft on the ascending aorta 30mm. I was told that less than 5% of the valve patients have both valves replaced + the graft, so, I thought my story would be useful and may be inspiring for some. But I still have many unanswered questions, and some times just want to hear the words of wisdom from the fellow «valve» people.....




PART 1:




First of all, in October 2017 I got a dream top-Management job in Ukraine with double the salary than I had before. The job turned out to be much more stressful than I had expected. My entire life I have battled stress and anxiety and I blame them for the OHS at 42, rather than later. But, we have no time machine....




Ever since I was born, I was diagnosed with a leaky aortal bicuspid valve. In the late 70’s in the Soviet Union the diagnosis was done by the stethoscope - a doctor had to hear a special murmur in the heart. There were no high-tech tools at the time. I have always realized I was different - I always came in last in 100m and 3km runs we had in school, I could never lift very heavy weights, and I would get out of breath above the 5th floor. But it never bothered me, as I didn’t feel any pain 99% of the time, only occasional unpleasant sensations in the heart.

When I immigrated to the US in mid nineties, right out of high-school, my dad took me to the cardiologist. They ran an ECHO test on me, and an aging grey-haired doctor said the worlds I never forget:

-Oh, don’t worry, when you will be 40, we will replace the aortal valve in your heart and put a graft on your enlarged aorta, and you will be OK.

I was 18. I thought 40 year old people are like grandfathers, I’d never get to 40. It won’t be me, it will be somebody else. Ever since, I had a check-up every year or two to make sure I was ok.

2010 was a wake-up call. I got too stressed out at work in KY before the departure to a new job in Russia, and I ended up in the emergency ward for a night. Another smart old doctor came in and told me another phrase I will never forget:
  • you must calm down right now and get rid of the stress in your head, or I will operate on you tomorrow.
Magically, his words worked, I just walked away from the hospital like nothing had ever happened.

Then I moved to Russia, and of course a year later I was stressed to the limits again. Ended up doing a full range of tests there and the docs told me I should be operated very soon. Almost immediately after that, a new job took me to the Czech Republic, and I went for the second opinion there. I was blessed to find one of the best cardiologists in the world (in my opinion), Doctor Indrák. He spoke perfect Russian occasionally mixing it in with his perfect British English. He was the first doctor ever who talked (!!!) to me for 1.5hrs about my condition and the treatment plan. Basically, he gave me a different set of meds and again convinced me to control my stress, and I must credit him for another 6 years of life without surgery.




I would go to him every 6 months, as he said that the day X might come at anytime, and we must not miss it. Echo, stress test, blood work, EKG, etc. We wanted to do the surgery as late in life as possible, but not too late. 3 days before my departure to Ukraine for yet another job in October 2017 I went to him and he said .....the day X is here! My aorta was 52-54mm, and the blood expulsion rate looked bad on the ECHO as well. Damn! I was devastated! It was the worst possible time ever. I just landed my dream job, and I must go through the open heart surgery now?! We talked , and I convinced him (myself?) that I have another 6 months, as I need to establish myself at the new company to allow me to take time off to get operated on. We set the date for June 2018. I was symptoms free at the time, meaning that apart from climbing up stairs and occasional heart pain for 3-5min a day, I was in good shape.




In early February 2018, one day I woke up feeling 200lb plate on my chest. Then I would wake up every night at 4am for no apparent reason. Then I would get heart pain 5,6,10,12....almost all hours of the day. I measured my blood pressure. It was 155/100, the meds weren’t holding it down. I went to the local cardio center. They told me I have a couple of weeks, waiting until June is life-threatening.




I was in the middle of a lot of process changes in my new job, I was just in the middle establishing myself as a force in the company. I needed just 3-4 months, and didn’t have it. Worse, I had a probation period until end of February, and letting the boss know prior to the end of probation was risky - he could just terminate the contract with no obligation. Last day of Feb I told my boss....he was very understanding, he has huge back pain problems. He told me to go and take as much time as I need. I’m very grateful to him!




In February, I e-mailed my doc, and he set me up for surgery on March 22 in one of the best cardio-centers in Eastern Europe. Hospital Podlesi in the eastern Czech city of Trinec. They do just up to 8 surgeries per day, and the hospital feels like a family hospital, rather than “a conveyor”. My wife and my 4yr old son came over from Louisville to support me. I checked into the hospital on the 19th of March. Here where the difference with the US healthcare system begins. I thought for a while, if it was better to do it in US? But first, I had no insurance in US, and this operation would cost me about $250k out of pocket. Second, I really had no time to go through the tests, wait for the spot and so on in the US hospital. In the Czech Rep the whole thing cost me $1200 with ($800 annual insurance + $400 payment for a single room). The equipment in the hospital was identical to what I saw in top Kentucky hospitals a couple of years ago. And, the most important thing - I trusted the advise of my cardiologist, doctor Indrák to have it done there, 35mi away from Ostrava where I lived for 6 years from 2012-2017. I never read the heart forums much before the surgery, I just trusted his advise. I have since read a ton of literature, forums all over the world on the topic, watched hundreds of YouTube videos, but.....I would have done the same thing, even though, I can’t say I’m 100% cured now. The ticking noise is killing me....but I will get to to it later.







Part 2. The Hospital.




So, first 3 days they ran the tests on me while I’m in the hospital! So, I was mentally being prepared and watched over by the staff. I really didn’t want to go through the Echo-cardiogram where I had to swallow the wire (TEE), so they look at the heart from within. I did that in 2015, and I though I was going to die, it was an immensely repulsing and torturing procedure. I just couldn’t bear the tube in my throat. It took my doc a day to convince me that I must suffer through it....I did. I thought I’d better die right there, before the surgery, it lasted over 30min....but I made it.




2 hours later a head of the surgery ward and my doc walked in. They said that test might have just saved my life, because ....it found a damaged mitral valve! Damn it, I knew about the leaky aortal valve and the aortic aneurism, but nobody ever told me about the mitral valve!!! But, what can I say....it is what it is, nobody could really tell me why, things just happen. A heart is more complex than the Cosmos, I think. It just looks simple, but how the hell it works I don’t think they really know. I really had no time to think about it, research the web, agonize why it has happened. I was glad they found it at the last minute.




A glimpse of hope. They have a leading surgeon who specializes in the valve repairs, and he gave 90% prediction that he can repair my valves, by fixing the flaps of the valves. This technique was developed in the US, of course, and is more and more used globally. They said that would buy me about 10-15 years of life before another surgery to put the replacement valves in. I was sad, but optimistic about the repair, and went on the operating table next morning with a confidence and a smile. I was surprised myself, I had no stress. I felt peaceful and calm! (It was no walk in the park, fully opened sternum, heart-lung machine, 3.5hrs on the table and 3 more hours until I woke up.)They put a mask on me and I fell asleep ....




I woke up in the ICU surrounded by the nurses and the ICU doctor. I don’t remember how I signaled to remove the breathing tube from my throat, but the next thing I remember is ....the ticking coming out of my heart! I knew it then.....The ICU doc just confirmed it. That 10% of un-success materialized. The surgeon spent and extra hour trying to repair the mitral valve, but when he was done, he was sure that the fix wouldn’t last more than 2-3 years, and it was just not worth it. So, plan B went in place - he put the St. Jude mechanical valves in. He came in later and apologized, but who am I to blame him? I was just unlucky that day. Or may be, it was God’s plan to spare me from another surgery later?




I spent 4 days in the ICU. There were 5 “boxes” with 2 people in each and a common hallway with the rooms for the docs and the nurses on the other side. But I was in my box by myself. 1 nurse for each box. So, I had a personal nurse. I remember a couple of minutes after waking up, I wanted to turn on a side, as I never sleep on the back. Turning? Damn, I couldn’t even move my body horizontally on the bed. It felt like I was hit by a train. I slid down, and pushed with my legs from the bottom of the bed, just to adjust my position horizontally. Getting on a side would take me another 5 days. First night, 2 nurses had me cross my hands on the chest and they turned me on a side and put me up on the bed. I thought I would pass out as they were moving me. I had a catheter in my neck, a catheter in my arm (4 IV’s were flowing in), a blood draining tube on the bottom of my chest, and a piss tube right in my penis. It felt so weird that I couldn’t go pee, I didn’t even feel when I peed, it was kind of automatic. 2nd day I felt that I wanted to “go big” in the toilet. A nurse that that I won’t be able to. I insisted, she brought a special chair with a hole next to bed. Damn it, she was right. Entire 4 days I was in ICU I couldn’t and really didn’t want to do it.

My wife and son would come in for 10min while I was in ICU and it was a big help! There were a kind of curfew due to the flu, and the visitors were not allowed, but they made an exception for them. My son was clueless what was going on, he will be 5 in June. But, he gave me a peace of mind.




On the 4th day I got moved to the surgical ward. I was able to walk around the ward, I had 2 visitors, I felt better every hour. On the 5th day, they did an ECHO on me, and the ECHO doc told me that everything is 100% perfect. My cardiologist told me that they plan to check me out on the 9th day. Remember, in US, with this surgery, they kick you home on the 5th day, sometimes on the 4th!

6th day has arrived. I noticed that I begin to lose breath sometime, I threw up once and the temperature got up a bit. They ran an EKG, and called in a rhythmic doctor. He said my rhythm is a bit off, probably due to the heart still healing, gave me some IV and left. I didn’t sleep through the night as I was getting short of breath and temperature.

On the 7th day they scheduled an ECHO again, as I was not improving. I walked to the ECHO room myself, laid on the test-bed and almost collapsed there from the shortness of breath! I could see the eyes of the doctor in disbelief looking at the monitor! I knew something was screwed-up! He called in a nurse and had me evacuated on a wheel-chair back. The family came in and my son was drawing the hospital and the Ambulances in peace. De Ja vue. The chief and my doc rush in with their eyes bigger than Shrek’s. WTF? I asked them to switch to English, as my wife doesn’t understand Czech. The blood is bleeding from my heart into the heart pericardium pocket and there is a hematoma there already. I must be operated immediately. I just couldn’t believe it! 36 hours ago I was on a highway to recovery, beating all expectations , and now another operation? I was ready to lose it emotionally, but my son was just sitting there and drawing something, like nothing is happening.

Oh, by the way, before the 1st surgery, the Chief gave me a paper to sign. It said that in North America, Europe, Japan, in my age group the risk of death is 6.5% for that type of surgery. Big data at work, huh? So I signed it. This time he had another paper in hand, I guess it’s some kind of Czech Law, where they inform you of your chances. I didn’t even look at the number, I knew it was in double digits.....










Part 3. Second Surgery.




.....after the 2nd surgery, I was told that If it had taken place just 2 hours later I had no chance. They sucked 600ml out of the heart pocket, and another 600ml drained out of me in the ICU. The cause? They had to give a high dose of anticoagulants for my valves at the first days, but the graft on the aorta doesn’t like the high doses first week and it caused the aorta to bleed. Typically, it happens before the 5th day, in very rare exceptions - afterwards. I was that rare exception.




....de Ja vue. I wake up in ICU again, exactly a week later. The same ICU doc the same nurses surround my bed. They all keep repeating the same thing:
  • Hello, you are ok. Everything went well. The surgery was a success. How do you feel?
First thing I realized - I don’t see well, it’s all blurry. I just had a LASIC 2 years ago. I knew the anesthesia could mess the eye sight. I close and open my eyes again, the sight returns! All right, what’s next? Why do they keep repeating the same things? I’m really getting confused. Then I begin to realize that I have a breathing tube down my throat. Get it out do there! But I can’t tell it them, I can’t speak. How did I communicate it to them a week ago? Then I turn left and realize that the doc is holding his finger in my hand. And in order to ask him to remove the tube I need to squeeze it! That’s what I did last time right! Ok, I’m excited I figured it out - my brain sends a signal to my hand to squeeze it.....and nothing happens! I can’t! I can’t squeeze it! The nurses keep repeating what they had been saying all along....I want to take the last breath before the effort, but I can’t breath! I have a tube that is breathing for me! I pray to all the Universe that I would do good things to people, I will help the poor, I’ll be a good man, just let me squeeze his finger. I close my eyes and manage to slowly squeeze it. The doc is smiling and immediately removes the tube. Everybody goes away but my nurse. The whole experience above probably took 20sec, but it felt like eternity....




The second surgery lasted only 1.5hr compared to 3.5hrs during the first. But the recovery was 10 times harder. At that point I knew what is ahead of me, all steps that I took a week ago, took 1 day longer this time. One the 2nd day, I raised my bed and just cried for the first time in like 30 years. The pain and the ticking was unbearable!

The nurses and the docs and the staff were the most caring. The equipment was brand new. All was done with the utmost care and speed. I could see the forest next to the hospital and the deer coming by, it was nerve calming. The very end of March, the Sun started shining brighter, the breath of Spring was just in the air.

They removed the drain tube on the 4th day, when nothing was coming out. I got 1.5L blood transfusion. Thanks to all the people who donate blood! You helped them save my life!




Day 5 after the 2nd surgery, I’m back in the surgical ward. They planned to keep me there again for 5 days. Day 9 after the 2nd surgery, I’m cleared to go in the morning of day 10 to the special heart sanatorium (rehab center in the mountains of Moravia where patients go for 4 weeks recovery after the heart surgeries). I woke up at 3am with 38.0C (100.5F) and excruciating cough! Each cough I felt like somebody was stabbing me in the chest and slicing it in half along the scar line from the neck to the stomach. It took 10min after each cough to recover and then the cough would continue. A doctor came in and said that I got an inflammation of the upper breathing passages, probably, the result of the tubes being inserted in my throat twice. I spent another 5 days there. Day 23 after I checked-in they sent me to the rehab.




Part 4. Rehab center.




I got out of rehab after 4 weeks today. It has helped me a lot. I had back pains, panic attacks, sleepless nights, the staff there is trained to take care of it. Specialized physical exercises and natural spring water treatments have helped a lot. I came in being able to walk 300m, I got out comfortably walking 10km in the park every day, I bet you it’s more than I walked in US daily. I feel that the physical strength is returning to me, but....




THE TICKING NOISE IS KILLING ME! I’m GOING CRAZY! Literally! I managed to tune it out for most part of the day, but, when I get to bed and it gets quiet, I just can’t bear it. When I try to fall asleep, it takes me 2-3hrs. I tried it all - the ocean waves music, the rock music, the birds chirping - nothing works! The only way is Xanax and Citalopram 30min before sleep. I read some forums that people say that they got used it in a couple of months, some never heard it from the beginning, some still hear it many years later and bothered by it, and I read one post that a guy killed himself......

I must return to work next week. I have no idea how I’d do it. I’m mentally not ready. I’m scared of becoming dependent on drugs to sleep, but I see no other way now. The noise doesn’t seem to diminish at all. I know it’s a rhetorical question, but what should I do about it? My soul is torn- on one side, it tells me I must be grateful to be alive, on another side - I’m going psycho with the ticking!!!

Thanks to all who have managed to read it all!
 
Felix, Xanax is a short-acting drug that makes the panic attacks between doses worse.
Maybe physically spending time with someone who also has a mechanical valve will make you feel better.
It sounds like early days yet. don't despair.
Get off the Xanax and be patient. Things will improve.
 
Hi Felix, interesting read that, thanks for sharing it,....
regarding the ticking, personally it doesn't bother me although i am very aware of it.
you probably will have it for life so you need to get use to it, my method was to train my brain that the ticking is a reassuring noise & its
keeping me alive.... i now find it comforting instead of annoying
turn it into a positive if you can.
 
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leadville! Thanks for the encouraging words!
I just wonder if the loud ticking sound is due to the 2 valves that I have or it has no difference? I’ve read a lot of forums/opinions. Some people don’t hear the valves at all, some hear it occasionally, some, like myself, hear it all the time. What is the reason? Loose tolerances on the valve flaps? Anatomy? Better hearing?
 
Hi FelixC....welcome from another Louisvillian. You are only six weeks post-op and it will take some time for your body to heal around the new valves in addition to the physical and mental trauma of the surgery itself.......but it will happen. Personally I've not heard mine in years....and years.....and years. You will always know the valves are there but the "clicking" should subside with time. BTW, anatomy and hearing will play a role in valve sound...,.but I wouldn't be concerned with "loose tolerances on the valve".....especially valves that have been around as long as St. Jude.
 
Dick0236!
your life story is an inspiration! I told my doc that you have had a valve since 1967, he was excited that mechanical valves work so long! I personally would like to wish you many many many years of healthy living! I’ve read a lot of your posts here, and you are doing a great service to the ever growing community of “valve people”!
 
FelixC
I just wanted to add that I agree with all the posts above and wanted to say "hang in there mate". I thought I'd mention a few things too.
Soon after my surgery (and for some months) I was unaccountably unhappy, dejected and disappointed. Not only with the surgery but with many things. I felt that my eyesight had deteriorated (in my eyes ability to focus) to a point worse than pre-surgery. This started in hospital and over the months it was clear that it was actually just where it had been but I perceived it as worse.

I have had 3 OHS, and my second was a valve replacement. When I got out of ICU and into the ward I noticed not only the ticking but also how strong my pulse was .. sitting cross legged in bed I rocked observably with the force of each beat (while say, trying to reply to something on my phone).

I understood that the subjective variations in hearing ticking or in my case thumping from the valve is related to scar tissue and the making of more solid connections in the thoracic cavity leading to better physical conduction of the sound.

Like Leadville and Dick I'm now just "aware of it" rather than "unahappy with it" ... my view has always been (yes, since I was a kid) that I along can decide how I relate to something. I can change my views if I wish. So taking the view that the ticking is bad is just setting yourself up for unhappiness.

It just takes a steady slow pull of the reins to move the horse in the direction you want it to be - meaning happy

Anyway, over time (its early days for you yet) you'll no doubt have other questions (such as INR management) so feel free to pop back here and ask away.

Best Wishes
 
Well I'm certainly one to say the ticking bothers me but nothing like it did to start with , it's certainly gotten less by a long shot, and I don't dwell on it now

I can go hours on end now and then it's like then I become aware of the sound and think **** I haven't noticed that since 8 oclock this morning and its 3pm now... so it does get better !!

And yep sleeping to start with was crap for me too , the hours lying there awake aren't pleasant , I had to take zopiclone for a few months,
but now I go to bed and lying down still makes it resonate like a piece of PVC drain pipe getting whacked,

but I'm tuned out to it now for the most part and it's off to the land of nod pretty quick these days

so even though you think how am I ever going to get use to this you do and you will !! :)
 
I've been ticking for 27 years. If I don't hear ticking, then I'll worry. I only didn't tick for just short of 18 years, so this is my norm. The fun part is when other people hear me. Someone in class when I was younger asked me if I was wearing a really loud watch during a test. I teach some classes now, and my students hear it during tests. Anyone in a quiet room with me can hear it. Good times.

I tend to use humor with it. When someone learns of the constant ticking I'll say, "Try living with that in your head for 27 years. Is it any surprise I'm a little weird?"

During activity I don't really notice it. Running or biking, hiking, just general busy handyman type stuff around the house. I don't hear it then. Just when it's quiet and I'm in dire need of sleep. Then it JUST WON'T STOP!!! :)
 
Thanks to all for your kind words and insightful comments! I realize, each day after the surgery won’t be the same as before the surgery.....Ticking is really tough to manage right now for me, but I’m doing better. 2 nights now w/o the sleeping pills! But, sometimes I’m sitting somewhere and hear the ticking right up in my neck, it’s hard to mute it out......And, sometimes I feel that the sound is more crisp. How do you explain that? What does it have to do with?

another issue that I’m thinking a lot about is the bleeding. I’m clumsy, and have cut myself a lot of times with the paper, razor , lawn chairs, garbage cans, etc. Any special gel/patch I should buy and carry with me to better deal with the possible bleeding? How do you guys manage that?

INR....I am just starting. Should get a Coaguchek XS next week, I’m sure I’ll be coming back to ask you all some questions.

again, thanks to all of your for the unprecedented amount of information that I have found on this forum!
 
Minor bleeds are pretty common while on ACT and they can be a "pain in the A--". Cuts with a blade razor are especially annoying. I gave up blade shaving and have used my trusty Norelco for many years with almost zero problems. Keep a supply of pressure band aids on hand for most of the cuts you will experience. I have used a styptic(sp?) pencil in the past with mixed results. The important thing to remember is that you will not "bleed out" from the normal household cuts.......and if it looks like a few stitches are necessary, then get them without trying to self-medicate.
 
Warrick;n883271 said:
Well I'm certainly one to say the ticking bothers me but nothing like it did to start with , it's certainly gotten less by a long shot, and I don't dwell on it now

I can go hours on end now and then it's like then I become aware of the sound and think **** I haven't noticed that since 8 oclock this morning and its 3pm now... so it does get better !!

And yep sleeping to start with was crap for me too , the hours lying there awake aren't pleasant , I had to take zopiclone for a few months,
but now I go to bed and lying down still makes it resonate like a piece of PVC drain pipe getting whacked,

but I'm tuned out to it now for the most part and it's off to the land of nod pretty quick these days

that's all sounding like progress mate! Good to hear.
I've sworn off inner spring mattresses cos they resonate the sound (like my one in Finland), I use a Futon (proper cotton one with foam in the core) and that's fantastic.

I reckon by the time 5 more years pass you'll be like me and only hear it from time to time.

:)
 
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