5th month anniversay lingering symptoms

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oo0Michael0oo

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Joined
Aug 18, 2021
Messages
10
Hi all,

Coincidentally I am finally posting here again a nagging question and it is the anniversary of my surgery (June 14, 2021).

Short version:
After 5 months is this common and shared by anyone else here? I have the same symptoms that initially drew me to see a doctor and lead to an aortic valve replacement. I get exhausted quickly. The sensation in my body feels like it is a lack of adequate flow of oxygenated blood. I must pause to catch my breath. Sometimes I can only go 10-15 steps. Sometimes just rising from bed rest I am exhausted.

Longer version:
I believe I am beyond getting over the physical impact of the surgery process itself. I am also as far as I can achieve getting my work sea legs back in shape having been on LOA 2.5 months and this was no vacation. That leaves me freed up to assess the results. Unfortunately I still have all of the symptoms which lead me to see a doctor in the first place. The surgery does not appear to have benefited me with regards to those symptoms. Of course, if the Aortic valve was deteriorating and in such bad condition that it hardly allowed 25% of the blood to flow I have warded off some future consequence like a stroke or heart attack. However given this description of the pre-surgical valve condition I expected to feel a great boost. Instead I feel like I did before the surgery. I still feel exhausted easily, sometimes just walking 15 steps or even rising from bed rest. There is a limit to what I can do before I must stop at catch my breath. It feels like a lack of adequate blood flow of oxygenated blood. I only say "oxygenated" because it ties in with breathing. But I do not feel tingling like you would when you cut off circulation and a limb "falls asleep." I feel a pulsation as though every pump to a limb is felt because it is not enough. If I continue I am past my limit similar to when you hold out an arm long enough that you have to rest it. The ache can feel like a charley horse coming on. I never feel vertigo at least, that is good.

I returned to work a month before the doctors had initially recommended because I was out of time. We are only allowed to miss a certain number of days. My position at work was in jeopardy. I set up an echocardiogram and stress test so the doctors could evaluate my readiness to resume work. This was the 9th week post surgery. I returned the 10th week. The job is physical and I stepped into extremely busy and heatwave conditions. However I was seeing exponential advancement daily. I was amazed at what I could do. But that progress has plateaued. I cannot advance further getting up to speed in my work routine because of the exhaustion and limit before I must pause to catch my breath.

Also, I doubt these lingering symptoms have anything to do with returning to work sooner than initially expected. I had a green light after the tests. My job is physical and the doctors were considerate and perhaps generous releasing me early but once I got used to the pains of intense physical activity after open heart surgery's cuts into flesh and bone it soon became more a matter of stamina and blood supply meeting my needs. I knew I wasn't going to break the healing bone or tear the healing muscle or skin. They were past that vulnerable stage. These symptoms are not pains in muscles or bones. It can hurt but it is the pain of no strength or air and blood circulating when needed. This evening after merely folding laundry I feel exhaustion and pain in my chest. The chest pain is more a matter of what you feel when you cannot get enough air in your lungs. My lungs feel tired and ache.

I presented this to my surgeon and cardiologist. The surgeon said it can take some people as long as a year but to discuss this with the cardiologist. The cardiologist said he does not know what is going on and to go to my regular doctor. The echo and stress test both seem to focus on the heart alone. I get the impression the cardiologist does not connect dots beyond the heart. I know the surgeon is focused on the surgical aspect alone but I thought he would have a wider idea of recovery. The surgeon's head nurse seemed to know more than the cardiologist and surgeon in this regard. I do not have that much faith in my regular doctor. Initially my regular had told me that they are no longer advising people with heart murmurs to take antibiotics every time you have a dental procedure. That was contradicted by everyone from nurses to the cardiologist and surgeon as well as my dentist who had the scope to seek direct communication with my doctors before allowing me to see him again years ago when I just had a heart murmur. The dentist reaching out to my doctors took place back in 2015 when the heart murmur was discovered and I was under a different medical plan. That first cardiologist had said I could climb Mount Everest if I wanted to yet he never warned me of the dangers of infection from merely having your teeth cleaned. All of the doctors involved in the heart surgery are new to me this year as I switched medical plans in 2021.

So it has now been maybe 2-3+ months of no further advancement towards the anticipated "normal." I could probably narrow it down more precisely but I pretty much hit the plateau within a few weeks after returning to work. Everyday is a struggle at work. I had a reserve that I could call upon and easily recover from tapping into. I need that. I must be able to increase my pace. This is not something exercise would remedy. I believe need to be able to do regular normal everyday things like walking 20 steps and moving about swiftly before using exercise to expand that ability.

Note: the work I do is very physical and I work 10-13 hour days and rarely as little as 9 hours. I could use more sleep but I have managed this schedule for years only needing more than 4-5 hours rest when stressed excessively. One of the symptoms that lead me to seek a doctor was that these extra rest days no longer had an effect remedying the tired conditions I was experiencing.
 
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MdaPA

Well-known member
Joined
Jul 8, 2020
Messages
203
Unfortunately I still have all of the symptoms which lead me to see a doctor in the first place. The surgery does not appear to have benefited me with regards to those symptoms.
Not to disappoint you, but my wife has had 3 OHS's to replace/repair valves and they have not significantly relieved her symptoms either. She had the surgeries to bluntly, save her life. She knows what her limitations are and (usually) does not go beyond them.

I still feel exhausted easily, sometimes just walking 15 steps or even rising from bed rest.
Did you have these same symptoms before your AV surgery as well or are these new post surgery? If only since post surgery, then I would say this is concerning as most are walking well beyond 15 steps before they even leave the hospital (you should be walking laps around the hallways before discharge). You certainly would be tired after but you should recover and walk further the next time.

I returned to work a month before the doctors had initially recommended because I was out of time. We are only allowed to miss a certain number of days. My position at work was in jeopardy. I set up an echocardiogram and stress test so the doctors could evaluate my readiness to resume work. This was the 9th week post surgery. I returned the 10th week. The job is physical and I stepped into extremely busy and heatwave conditions. However I was seeing exponential advancement daily. I was amazed at what I could do. But that progress has plateaued. I cannot advance further getting up to speed in my work routine because of the exhaustion and limit before I must pause to catch my breath.
Maybe you should have listened to your doctors and not returned to work yet? Even though your echo and stress test may have given you an "ok" from a heart prospective, you obviously have either not given your body enough time to recover or you do have some other issue. There's a lot of healing that needs to take place beyond just the incision(s). Everyone is different and you have to listen to your body.

Perhaps go to Cardio-rehab where doctors can monitor your recovery?
 

oo0Michael0oo

Member
Joined
Aug 18, 2021
Messages
10
Not to disappoint you, but my wife has had 3 OHS's to replace/repair valves and they have not significantly relieved her symptoms either. She had the surgeries to bluntly, save her life. She knows what her limitations are and (usually) does not go beyond them.
Although it is not what I would want as the outcome I do wish my doctors would say this can be what happens in some cases. It has felt like no one wants to make a statement about what can be expected. They said "you have to have this done" yet they have never said how I would feel afterwards. It lead me to believe once the valve was replaced I would feel at least as good as I did before it deteriorated if not better than ever. I had the murmur fourteen years. I was not aware that it was deteriorating. Although I was more physically active than ever in the previous 2 years leading to the surgery it was only the two months prior to surgery that I had symptoms indicating the valve was seriously deteriorated.

Did you have these same symptoms before your AV surgery as well or are these new post surgery? If only since post surgery, then I would say this is concerning as most are walking well beyond 15 steps before they even leave the hospital (you should be walking laps around the hallways before discharge). You certainly would be tired after but you should recover and walk further the next time.
True, you cannot be released from the hospital unless you demonstrate the ability to walk a certain amount of distance routinely. In a hospital activity is homogenized because they cannot risk someone getting hurt. They treat everyone equally. I could easily stand and walk on my own from the day after surgery. I never experienced vertigo. I had a sternum clamp which atypically freed up movement of my arms. I really only needed assistance to manage the wires and tubes and connected machinery. There were random shaky days as you advanced and regressed but overall I was relatively mobile. However, they would not allow me to even stand up on my own without a nurse there with me.

Once home and away from the cautions I was surprised at what I could do. I live on the 2nd floor. I was worried about climbing stairs. The hospital had a practice staircase of 3 shallow steps. Their concern made me nervous. The day I got home I climbed my stairs easily on my own. During my home recovery I was walking 2000-5000 yards around the neighborhood on my own. I would go up and down the stairs multiple times as part of an exercise routine. Ironically, the day I jogged for the first time post surgery was the day of my stress test. I parked in the wrong lot and had to get across the hospital campus to make my appointment. If I did not jog I would have been late.

What I described of these unrelenting symptoms are not constant. They were not as prominent when I first returned to work. Before I returned for work I was never pushing myself to the degree I have since returning to work. If I had a desk job I could have returned to work within 3 weeks post surgery. As part of my job I drive and lift as much as 70lbs or more. Until the 8th week post surgery I could not sit in a vehicle where there was an active airbag and I could not lift more than 5lbs. By my 11th week I was driving all over climbing in and out of my vehicle lifting and carrying a variety of weights. At work I walk up and down steep inclines. I was walking on relatively level ground when convalescing at home. In the hospital the halls were absolutely flat. I used the word "sometimes" when I said I cannot walk 15 steps or rise from bed without feeling exhausted. It is not consistent. It seems to come on without a logical reason which could help determine the cause. I can get a night of good solid rest and have one of the worst days afterwards or I can have a good night of quality rest and have a good day afterwards. They are not constant but their existence has kept me from advancing back to a high performance level. I must operate at a limited pace. Yesterday was one of the worst days for me. I was struggling the whole day. Today I managed all day without having to pause once to catch my breath.

Maybe you should have listened to your doctors and not returned to work yet? Even though your echo and stress test may have given you an "ok" from a heart prospective, you obviously have either not given your body enough time to recover or you do have some other issue. There's a lot of healing that needs to take place beyond just the incision(s). Everyone is different and you have to listen to your body.
Is this really "obvious"? So far there is no medical evidence tying my symptoms to either returning to work early or having some other ailment. Your wife's circumstances are similar to mine. Even if her doctors stated she pushed herself beyond her body's recovery requirements or that she has some other ailment responsible for the symptoms which have not been alleviated by heart surgery we could not say the same is true for me. It is conjecture until it is medically validated through tests by physicians. I have listened to my doctors all along. All I did was explain that if possible I needed to be released to work. I requested the two tests both to provide data demonstrating one way or the other and so that I did not have to jump through hoops as my company decided whether I was fit for work doing the tests themselves. My presenting a physician's release to return to work took my company out of the equation. It would have been a disaster. I only had 90 days to be on LOA. My company would have taken weeks to arrange everything and process me back in. WIth a letter of release I am not required to prove I am fit for work annually repeating the tests. It is a closed case.

Perhaps go to Cardio-rehab where doctors can monitor your recovery?
Cardio rehab has not been available to me. It was not proposed in the recovery plan and I cannot afford it outside of my medical insurance if I am not sent to it by my doctors. I have met several people in my neighborhood who have had heart valve replacement surgery. I have been surprised by the diversity of approaches. For instance, blood thinners were presented to me as imperative yet two people were never put on blood thinners and one has a mechanical valve. Only one went to cardiac rehab.
 
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leadville

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Hey, did you receive a mechanical valve ?
I note your Bio says you take warfarin so i am assuming you have, you say it feels like a lack of oxygenated blood ?

have you been checked for anemia ? it may sound a simple issue but in some cases the Valve can damage the Cells, it's only a thought because by now you should be feeling really well.

 

oo0Michael0oo

Member
Joined
Aug 18, 2021
Messages
10
I need to update my bio. I forgot there was one here. I have a biological valve. I am off Warfarin. It has been a few weeks now since it was discontinued.

(I just looked but could not figure out how to edit the bio.)

These symptoms have been independent of the Warfarin. The monitoring of blood was well managed with a few slight adjustments depending on my diet. At the end I started going off that managed pattern. The clinic did not have a chance to get it under control before the surgeon said it was time to end the Warfarin. His decision was based on time alone.

I thought it was all a bit weird. What did it do besides control the blood viscosity temporarily? Now it is The Wild West.

He used the term "therapy" as though it trained my body or something but the way I was off the balance in the final week or two showed my body was going to react to a change in diet. I was tired of the same diet so I started eating differently. It threw the numbers off and I was not on Warfarin long enough to get back on track. When I first started working with the Coumadin Clinic they said it was important to eat a consistent diet. I broke from that consistency and they were out of the picture before they identified what I was eating which was throwing everything off.

I do recall I was anemic while in the hospital post surgery. I had a blood transfusion during surgery. I recovered from it before I was released from the hospital. I also had extremely low blood pressure. It dropped every time I went to sleep. The alarms would go off. All of that was over before I left the hospital but it was part of what kept me there longer than usual.

Once released I was getting blood work weekly. Before the surgery back when I had a full work up anemia was not mentioned.

I had these symptoms before the surgery. But it does seem that unless they test for something specific there are many possibilities they cannot detect. I suppose I could even have some form of cancer and they have not looked for it so it has gone undetected.

I am going to read about anemia though. You never know.
 
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leadville

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Thanks for the updated bio reply, I assumed you had a mech valve and possible hemolytic Anemia caused by the valve.

I would suggest this is not the case given the further information.



Good luck finding the issue 👍
 
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perrybucsdad

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Messages
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Location
Perry Ohio
I had my valve replacement back in 1997, so I am trying to recall what I felt like 5 months after surgery, but if I recall correctly, It took me almost a year to start to feel really good. You need to remember that you body had a very invasive procedure to it. I was 28 when I had mine done and I really felt I would bounce back really quickly, but it did take time. Just take it one day at a time, try and enjoy it, and you will hopefully feel better. Get the sleep you are depriving yourself of as your body needs to heal. I know I wanted to rush back to work too (I was going nuts sitting around), but thank God I have a loving wife who knew how to push back on me in a loving way to get me to slow down. My employer was also great with this at the time too.
 

almost_hectic

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naples, florida
Yes took me a year to fully recover also. But after 5 months I was feeling pretty good actually. I highly recommend cardiac rehab. At the very least be walking every day and trying to increase how far you walk. It takes more than just time to heal. I’d also recommend trying to get more sleep. Seriously sleeping is when you heal. But for sure talk to your cardiologist and see what they say. Medications are sometimes what can wipe you out too. See if anything they have you on has side effects, those can be the culprit for sure.
 

Chuck C

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For instance, blood thinners were presented to me as imperative yet two people were never put on blood thinners and one has a mechanical valve.
If one of your neighbors has a mechanical valve and his cardiologist did not put him on anti-coagulation, that is malpractice. Everyone with a mechanical valve needs to be on anti-coagulation or they face a very serious risk of thrombosis.
 

Chuck C

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By 5 months I would expect that you should not be getting shortness of breath after only 15 steps.

It could be a lot of things, but you should insist on an echo from your medical team to rule out the following:

Endocarditis. This can happen at any point, but is probably more of a risk in the first 6 months after surgery, due to the tissue being more vulnerable while it is in the healing phase. This is a very serious issue.

Tears in your valve leaflets: You have a tissue valve. Tissue valves can develope tears and this can happen at any time after surgery. This is very serious and should be ruled out with an echo.

Paravalvular leak:
There is some possibility of a paravalvular leak, particularly if you put significant stress on your system before it had fully healed.
" These symptoms include shortness of breath, unexplained weight gain and swelling in their legs and feet"

As noted, it could be a number of things, but you want to rule out any of the above or other issues.

Hopefully it is none of the above and something which will totally abate within a few months.
 

carolinemc

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May 31, 2010
Messages
978
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kansas city, mo
Hi all,

Coincidentally I am finally posting here again a nagging question and it is the anniversary of my surgery (June 14, 2021).

Short version:
After 5 months is this common and shared by anyone else here? I have the same symptoms that initially drew me to see a doctor and lead to an aortic valve replacement. I get exhausted quickly. The sensation in my body feels like it is a lack of adequate flow of oxygenated blood. I must pause to catch my breath. Sometimes I can only go 10-15 steps. Sometimes just rising from bed rest I am exhausted.

Longer version:
I believe I am beyond getting over the physical impact of the surgery process itself. I am also as far as I can achieve getting my work sea legs back in shape having been on LOA 2.5 months and this was no vacation. That leaves me freed up to assess the results. Unfortunately I still have all of the symptoms which lead me to see a doctor in the first place. The surgery does not appear to have benefited me with regards to those symptoms. Of course, if the Aortic valve was deteriorating and in such bad condition that it hardly allowed 25% of the blood to flow I have warded off some future consequence like a stroke or heart attack. However given this description of the pre-surgical valve condition I expected to feel a great boost. Instead I feel like I did before the surgery. I still feel exhausted easily, sometimes just walking 15 steps or even rising from bed rest. There is a limit to what I can do before I must stop at catch my breath. It feels like a lack of adequate blood flow of oxygenated blood. I only say "oxygenated" because it ties in with breathing. But I do not feel tingling like you would when you cut off circulation and a limb "falls asleep." I feel a pulsation as though every pump to a limb is felt because it is not enough. If I continue I am past my limit similar to when you hold out an arm long enough that you have to rest it. The ache can feel like a charley horse coming on. I never feel vertigo at least, that is good.

I returned to work a month before the doctors had initially recommended because I was out of time. We are only allowed to miss a certain number of days. My position at work was in jeopardy. I set up an echocardiogram and stress test so the doctors could evaluate my readiness to resume work. This was the 9th week post surgery. I returned the 10th week. The job is physical and I stepped into extremely busy and heatwave conditions. However I was seeing exponential advancement daily. I was amazed at what I could do. But that progress has plateaued. I cannot advance further getting up to speed in my work routine because of the exhaustion and limit before I must pause to catch my breath.

Also, I doubt these lingering symptoms have anything to do with returning to work sooner than initially expected. I had a green light after the tests. My job is physical and the doctors were considerate and perhaps generous releasing me early but once I got used to the pains of intense physical activity after open heart surgery's cuts into flesh and bone it soon became more a matter of stamina and blood supply meeting my needs. I knew I wasn't going to break the healing bone or tear the healing muscle or skin. They were past that vulnerable stage. These symptoms are not pains in muscles or bones. It can hurt but it is the pain of no strength or air and blood circulating when needed. This evening after merely folding laundry I feel exhaustion and pain in my chest. The chest pain is more a matter of what you feel when you cannot get enough air in your lungs. My lungs feel tired and ache.

I presented this to my surgeon and cardiologist. The surgeon said it can take some people as long as a year but to discuss this with the cardiologist. The cardiologist said he does not know what is going on and to go to my regular doctor. The echo and stress test both seem to focus on the heart alone. I get the impression the cardiologist does not connect dots beyond the heart. I know the surgeon is focused on the surgical aspect alone but I thought he would have a wider idea of recovery. The surgeon's head nurse seemed to know more than the cardiologist and surgeon in this regard. I do not have that much faith in my regular doctor. Initially my regular had told me that they are no longer advising people with heart murmurs to take antibiotics every time you have a dental procedure. That was contradicted by everyone from nurses to the cardiologist and surgeon as well as my dentist who had the scope to seek direct communication with my doctors before allowing me to see him again years ago when I just had a heart murmur. The dentist reaching out to my doctors took place back in 2015 when the heart murmur was discovered and I was under a different medical plan. That first cardiologist had said I could climb Mount Everest if I wanted to yet he never warned me of the dangers of infection from merely having your teeth cleaned. All of the doctors involved in the heart surgery are new to me this year as I switched medical plans in 2021.

So it has now been maybe 2-3+ months of no further advancement towards the anticipated "normal." I could probably narrow it down more precisely but I pretty much hit the plateau within a few weeks after returning to work. Everyday is a struggle at work. I had a reserve that I could call upon and easily recover from tapping into. I need that. I must be able to increase my pace. This is not something exercise would remedy. I believe need to be able to do regular normal everyday things like walking 20 steps and moving about swiftly before using exercise to expand that ability.

Note: the work I do is very physical and I work 10-13 hour days and rarely as little as 9 hours. I could use more sleep but I have managed this schedule for years only needing more than 4-5 hours rest when stressed excessively. One of the symptoms that lead me to seek a doctor was that these extra rest days no longer had an effect remedying the tired conditions I was experiencing.
Your PC is so wrong, because cardiologists do still recommend that you premed for any dental work to be done to prevent infection to go to the heart. Most dentists will not touch a cardiac patient without pre medicating first. I hope you are looking for a different PC to work with your cardio.
And for the recovery, you may have rushed back too soon. For it does take a year for the muscles to heal from OHS due to the trauma from being cut open. I am so sorry you are struggling everyday. Have you talked to the Cardio about the struggles you are having? You should. Hopefully with a new PC and getting with the cardio, everyone can figure out what to do for you to get better.
So sorry for your struggles.
 

oo0Michael0oo

Member
Joined
Aug 18, 2021
Messages
10
Thank you all for your input.

I have had an echo recently, October, and apparently they dont schedule them as close together as I had mine and one was automatically cancelled. I had to push to get the two most recent. I have had 4 since May but one was pre-surgery prep and one was done while in the hospital. I would have had just 3 but I pushed to have one in Aug so it could be used to determine work readiness. I later learned the myocardial perfusion imaging overlapped the echo data but it is a long story why I got the MCI instead of a standard stress test.
 
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