New(ish) Member Post 4 AVR's (2 Tissue + 2 mech) and 5 Sternotomies later......

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Rixtory

Member
Joined
Sep 30, 2010
Messages
7
Location
Lehigh Valley, PA
I has active here for a bit in 2010 but got lost along the for the past dozen years. I am 63YO Male on my 4th AVR (completed March 2021). I was born with a Bicuspid Aortic Valve and was sideswiped in 1992 by Endocarditis.
Between all these Valve replacements, I've worked, raised a family, Backpacked 1/3 of the Appalachian trail, climbed many mountains (ADK46re) and probably road biked at least 15,000-18,000 miles. I was on Warfarin for over a decade and am now on Xarelto. I'd love to offer support to anyone who finds themself facing down a heart surgery. Please reach out to me at [email protected] or here on the forum.

More about my history...
#1. My first AVR was Jan 2002 with a "stentless" Toronto Procedure (Dr. Garzia) at St. Lukes Bethlehem, which went well until my aorta burst in day 1 of step down, leading to emergency surgery to repair the aorta, which during the surgery, caused the new valve to partially unseat. Woke up to find that my nurse for the next 2 nights was none other than Charles Cullen the (later) convicted Angel of Death. I vividly remember him for holding my fentanyl and dilaudid from me as I writhed in pain for hours, Feedly yelling "Charlie Please Help Me!?!?!".

#2 I had a Redo with a St. Judes Mechanical valve at by the great Dr. Sary Aranky Brigham-Womens in 2006 due to severe regurgitation. The surgery was not uneventful. The Heart Lung Cannula in my femoral artery, tore out during surgery requiring and emergency stitch up and inserting into the other Femoral artery, prolonging surgery by a few hours. the rest was uneventful, and I was fine for the next 4 years.

#3 in 2010 I was again hit with sepsis and endocarditis and ended up with an aortic aneurysm. I went back to Brigham Womens and Dr. Aranky. I had a new Aortic Mechanical Valve placed in me, but when I came off Heart & Lung machine the new stitching between the valve and aorta was leaking badly. After some quick conferencing, my body was chilled down and plans were made to cut out my aorta from the heart to the Arch and replace with a synthetic Kevlar aorta and re-attach the new mechanical valve. The entire surgery lasted 21 hours. I was fine for the next decade.

In early 2019, I started having swollen legs, constant cough and continual gout. After seeing a several different specialists, we realized that my Ejection Fraction down in the low 30's, I was in AFIB and aggravating my Vagas nerve and I was holding a lot of water weight. Much was solved by January 2020 with the addition of a pacemaker and going on diuretics. This was fine until 2021.

January 3, 2021. While working that morning, my hands started shaking uncontrollable and I couldn't control my bladder. I laid down on a towel and plastic bag underneath, not knowing what was wrong. When my wife came home, she took one look, and I ended up in the ER - Sepsis and a minor embolism I was discharged after several weeks only to have to rush back to the hospital a week later after a Echo TTE picked up an aortic abscess. I stayed at the hospital for several days until a bed opened up at UPENN and was taken there by Ambulance (Now Late February).

#4 Late February 2023. I was presented at UPENN with a massive amount of thoracic adhesions/scarring from previous surgeries and told that my chances of a successful AVR were not the best, but they would do whatever they could. Over the next few days, I wrote goodbye letters to my children, wife, coworkers, friends and family. A difficult thing to do, as I prepared for surgery. The surgery took 3 days total. According to my surgeon and my wife, (and as best as I can explain while viewing the surgeon's notes) I was opened up and chilled down overnight as they had to drain the massive amount of excess fluid in my body prior to the actual operation. They also found the Aortic valve was "dehisced" from the aortic root, which was also torn from the heart and that the massive amount of scarring in my chest cavity caused the blood to be forced up through my aorta and into my body. The surgeon told me he had never seen anything like it and could not understand how I could have survived with this tear, since this is something that happened slowly. I was told they fashioned a new Aortic Root out of a bit of heart muscle and had me sewed up by days 3. I was in ICE for the next 3 weeks where I also received a new pacemaker and promptly got Pneumonia and needed a Tracheostomy, thereby extending my stay in the ICU. I was finally discharged in early April to Inpatient rehab in a wheelchair where I spent the next few weeks learning to walk (Shuffle) until I was well enough to go home late April 2021.

If you have read this far, I am doing fine. I was back to work by Mid-June 2021. I am back t the gym - lifting weights, but not overdoing it and I am back to bicycling 10-15 miles 4-5 days a week.

One thing I will say about the last hospital stay was the amount of hallucinations and dreams I had while strapped in an ICU bed all those weeks.
Anyway, I am happy to be alive and hopefully can help out others who are looking at heart surgery or have symptoms/questions.

Thank you for reading.
 
I has active here for a bit in 2010 but got lost along the for the past dozen years. I am 63YO Male on my 4th AVR (completed March 2021). I was born with a Bicuspid Aortic Valve and was sideswiped in 1992 by Endocarditis.
Between all these Valve replacements, I've worked, raised a family, Backpacked 1/3 of the Appalachian trail, climbed many mountains (ADK46re) and probably road biked at least 15,000-18,000 miles. I was on Warfarin for over a decade and am now on Xarelto. I'd love to offer support to anyone who finds themself facing down a heart surgery. Please reach out to me at [email protected] or here on the forum.

More about my history...
#1. My first AVR was Jan 2002 with a "stentless" Toronto Procedure (Dr. Garzia) at St. Lukes Bethlehem, which went well until my aorta burst in day 1 of step down, leading to emergency surgery to repair the aorta, which during the surgery, caused the new valve to partially unseat. Woke up to find that my nurse for the next 2 nights was none other than Charles Cullen the (later) convicted Angel of Death. I vividly remember him for holding my fentanyl and dilaudid from me as I writhed in pain for hours, Feedly yelling "Charlie Please Help Me!?!?!".

#2 I had a Redo with a St. Judes Mechanical valve at by the great Dr. Sary Aranky Brigham-Womens in 2006 due to severe regurgitation. The surgery was not uneventful. The Heart Lung Cannula in my femoral artery, tore out during surgery requiring and emergency stitch up and inserting into the other Femoral artery, prolonging surgery by a few hours. the rest was uneventful, and I was fine for the next 4 years.

#3 in 2010 I was again hit with sepsis and endocarditis and ended up with an aortic aneurysm. I went back to Brigham Womens and Dr. Aranky. I had a new Aortic Mechanical Valve placed in me, but when I came off Heart & Lung machine the new stitching between the valve and aorta was leaking badly. After some quick conferencing, my body was chilled down and plans were made to cut out my aorta from the heart to the Arch and replace with a synthetic Kevlar aorta and re-attach the new mechanical valve. The entire surgery lasted 21 hours. I was fine for the next decade.

In early 2019, I started having swollen legs, constant cough and continual gout. After seeing a several different specialists, we realized that my Ejection Fraction down in the low 30's, I was in AFIB and aggravating my Vagas nerve and I was holding a lot of water weight. Much was solved by January 2020 with the addition of a pacemaker and going on diuretics. This was fine until 2021.

January 3, 2021. While working that morning, my hands started shaking uncontrollable and I couldn't control my bladder. I laid down on a towel and plastic bag underneath, not knowing what was wrong. When my wife came home, she took one look, and I ended up in the ER - Sepsis and a minor embolism I was discharged after several weeks only to have to rush back to the hospital a week later after a Echo TTE picked up an aortic abscess. I stayed at the hospital for several days until a bed opened up at UPENN and was taken there by Ambulance (Now Late February).

#4 Late February 2023. I was presented at UPENN with a massive amount of thoracic adhesions/scarring from previous surgeries and told that my chances of a successful AVR were not the best, but they would do whatever they could. Over the next few days, I wrote goodbye letters to my children, wife, coworkers, friends and family. A difficult thing to do, as I prepared for surgery. The surgery took 3 days total. According to my surgeon and my wife, (and as best as I can explain while viewing the surgeon's notes) I was opened up and chilled down overnight as they had to drain the massive amount of excess fluid in my body prior to the actual operation. They also found the Aortic valve was "dehisced" from the aortic root, which was also torn from the heart and that the massive amount of scarring in my chest cavity caused the blood to be forced up through my aorta and into my body. The surgeon told me he had never seen anything like it and could not understand how I could have survived with this tear, since this is something that happened slowly. I was told they fashioned a new Aortic Root out of a bit of heart muscle and had me sewed up by days 3. I was in ICE for the next 3 weeks where I also received a new pacemaker and promptly got Pneumonia and needed a Tracheostomy, thereby extending my stay in the ICU. I was finally discharged in early April to Inpatient rehab in a wheelchair where I spent the next few weeks learning to walk (Shuffle) until I was well enough to go home late April 2021.

If you have read this far, I am doing fine. I was back to work by Mid-June 2021. I am back t the gym - lifting weights, but not overdoing it and I am back to bicycling 10-15 miles 4-5 days a week.

One thing I will say about the last hospital stay was the amount of hallucinations and dreams I had while strapped in an ICU bed all those weeks.
Anyway, I am happy to be alive and hopefully can help out others who are looking at heart surgery or have symptoms/questions.

Thank you for reading.
You are my latest icon for Resiliency! Glad you can zoom around on the bike.
 
Wow, great story. Amazing example of surviving some pretty challenging surgeries. Hope that the most recent one is your last!
 
I has active here for a bit in 2010 but got lost along the for the past dozen years. I am 63YO Male on my 4th AVR (completed March 2021). I was born with a Bicuspid Aortic Valve and was sideswiped in 1992 by Endocarditis.
Between all these Valve replacements, I've worked, raised a family, Backpacked 1/3 of the Appalachian trail, climbed many mountains (ADK46re) and probably road biked at least 15,000-18,000 miles. I was on Warfarin for over a decade and am now on Xarelto. I'd love to offer support to anyone who finds themself facing down a heart surgery. Please reach out to me at [email protected] or here on the forum.

More about my history...
#1. My first AVR was Jan 2002 with a "stentless" Toronto Procedure (Dr. Garzia) at St. Lukes Bethlehem, which went well until my aorta burst in day 1 of step down, leading to emergency surgery to repair the aorta, which during the surgery, caused the new valve to partially unseat. Woke up to find that my nurse for the next 2 nights was none other than Charles Cullen the (later) convicted Angel of Death. I vividly remember him for holding my fentanyl and dilaudid from me as I writhed in pain for hours, Feedly yelling "Charlie Please Help Me!?!?!".

#2 I had a Redo with a St. Judes Mechanical valve at by the great Dr. Sary Aranky Brigham-Womens in 2006 due to severe regurgitation. The surgery was not uneventful. The Heart Lung Cannula in my femoral artery, tore out during surgery requiring and emergency stitch up and inserting into the other Femoral artery, prolonging surgery by a few hours. the rest was uneventful, and I was fine for the next 4 years.

#3 in 2010 I was again hit with sepsis and endocarditis and ended up with an aortic aneurysm. I went back to Brigham Womens and Dr. Aranky. I had a new Aortic Mechanical Valve placed in me, but when I came off Heart & Lung machine the new stitching between the valve and aorta was leaking badly. After some quick conferencing, my body was chilled down and plans were made to cut out my aorta from the heart to the Arch and replace with a synthetic Kevlar aorta and re-attach the new mechanical valve. The entire surgery lasted 21 hours. I was fine for the next decade.

In early 2019, I started having swollen legs, constant cough and continual gout. After seeing a several different specialists, we realized that my Ejection Fraction down in the low 30's, I was in AFIB and aggravating my Vagas nerve and I was holding a lot of water weight. Much was solved by January 2020 with the addition of a pacemaker and going on diuretics. This was fine until 2021.

January 3, 2021. While working that morning, my hands started shaking uncontrollable and I couldn't control my bladder. I laid down on a towel and plastic bag underneath, not knowing what was wrong. When my wife came home, she took one look, and I ended up in the ER - Sepsis and a minor embolism I was discharged after several weeks only to have to rush back to the hospital a week later after a Echo TTE picked up an aortic abscess. I stayed at the hospital for several days until a bed opened up at UPENN and was taken there by Ambulance (Now Late February).

#4 Late February 2023. I was presented at UPENN with a massive amount of thoracic adhesions/scarring from previous surgeries and told that my chances of a successful AVR were not the best, but they would do whatever they could. Over the next few days, I wrote goodbye letters to my children, wife, coworkers, friends and family. A difficult thing to do, as I prepared for surgery. The surgery took 3 days total. According to my surgeon and my wife, (and as best as I can explain while viewing the surgeon's notes) I was opened up and chilled down overnight as they had to drain the massive amount of excess fluid in my body prior to the actual operation. They also found the Aortic valve was "dehisced" from the aortic root, which was also torn from the heart and that the massive amount of scarring in my chest cavity caused the blood to be forced up through my aorta and into my body. The surgeon told me he had never seen anything like it and could not understand how I could have survived with this tear, since this is something that happened slowly. I was told they fashioned a new Aortic Root out of a bit of heart muscle and had me sewed up by days 3. I was in ICE for the next 3 weeks where I also received a new pacemaker and promptly got Pneumonia and needed a Tracheostomy, thereby extending my stay in the ICU. I was finally discharged in early April to Inpatient rehab in a wheelchair where I spent the next few weeks learning to walk (Shuffle) until I was well enough to go home late April 2021.

If you have read this far, I am doing fine. I was back to work by Mid-June 2021. I am back t the gym - lifting weights, but not overdoing it and I am back to bicycling 10-15 miles 4-5 days a week.

One thing I will say about the last hospital stay was the amount of hallucinations and dreams I had while strapped in an ICU bed all those weeks.
Anyway, I am happy to be alive and hopefully can help out others who are looking at heart surgery or have symptoms/questions.

Thank you for reading.
Amazing!
 
Quite the story. But I am slightly confused about what type of valve you have currently. If it is a mechanical you should be on warfarin. Xarelto has been recognized as not working well with mechanical valves. Using a tissue valve would seem an odd choice since no one would want to do any more surgery or a TAVR with your story. Could you clarify?
 
Yes, really an inspiring story! I read it to my wife (who has had 3 OHS and all 4 valves worked on) and she said, "when you think you have it bad, there is always someone else that who has it worse".

I was finally discharged in early April to Inpatient rehab in a wheelchair where I spent the next few weeks learning to walk (Shuffle) until I was well enough to go home late April 2021.
Did you mean you got home late April 2023 (year is a typo)?

Late February 2023. I was presented at UPENN with a massive amount of thoracic adhesions/scarring from previous surgeries
Do you mind sharing the surgeon you had at UPENN (although I think I know)? You can send me a PM if you don't want to post it here.
 
Yes, really an inspiring story! I read it to my wife (who has had 3 OHS and all 4 valves worked on) and she said, "when you think you have it bad, there is always someone else that who has it worse".


Did you mean you got home late April 2023 (year is a typo)?


Do you mind sharing the surgeon you had at UPENN (although I think I know)? You can send me a PM if you don't want to post it here.
 
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Quite the story. But I am slightly confused about what type of valve you have currently. If it is a mechanical you should be on warfarin. Xarelto has been recognized as not working well with mechanical valves. Using a tissue valve would seem an odd choice since no one would want to do any more surgery or a TAVR with your story. Could you clarify?
The newest valve is Tissue. Apparently mechanical valves are prone to infections and with the number of infections I’ve had so far they thought she would be safer. The other thing is that they mentioned was that in 10 to 12 years when I need a new tissue valve again they could probably do minimally invasive surgery.
 
The newest valve is Tissue. Apparently mechanical valves are prone to infections and with the number of infections I’ve had so far they thought she would be safer. The other thing is that they mentioned was that in 10 to 12 years when I need a new tissue valve again they could probably do minimally invasive surgery.
Right now my understanding is that minimally invade procedures work with relatively untouched tissue. In your case with probably marked scarring that might make that approach very difficult.
 
The newest valve is Tissue. Apparently mechanical valves are prone to infections and with the number of infections I’ve had so far they thought she would be safer
That is the first that I’ve heard that. In fact, the studies seem to indicate the opposite, that bioprosthetic valves are more prone to infection. Links below

Endocarditis risk with bioprosthetic and mechanical valves: systematic review and meta-analysis - PubMed

https://www.annalscts.com/article/view/16668/html
 
That is the first that I’ve heard that. In fact, the studies seem to indicate the opposite, that bioprosthetic valves are more prone to infection. Links below

Endocarditis risk with bioprosthetic and mechanical valves: systematic review and meta-analysis - PubMed

https://www.annalscts.com/article/view/16668/html
People with mechanical valves are told they are more at risk for endocarditis from dental procedures, that's why we have to pre-medicate for dental procedures. The first reference doesn't state if this additional medication for mechanical valve recipients has been taken into account in their conclusion that mechanical is lower risk for endocarditis. The second link has nothing to do with comparing mech to tissue for future endocarditis.
 
People with mechanical valves are told they are more at risk for endocarditis from dental procedures, that's why we have to pre-medicate for dental procedures
The recommendation for antibiotics prior to dental procedures is not exclusive to those with mechanical valves. It is recommended for all patients with prosthetic valves, biological and mechanical. "Prostetic" valves includes both mechanical and bioprosthetic valves. See link below:


"Antibiotic prophylaxis is reasonable before the above-mentioned dental procedures for people with heart valve disease who have any of the following:

  1. Prosthetic cardiac valves, including transcatheter-implanted prostheses and homografts.
  2. Prosthetic material used for heart valve repair, such as annuloplasty rings, chords or clips.
  3. Previous IE.
  4. Unrepaired cyanotic congenital heart defect (birth defects with oxygen levels lower than normal) or repaired congenital heart defect, with residual shunts or valvular regurgitation at the site adjacent to the site of a prosthetic patch or prosthetic device.
  5. Cardiac transplant with valve regurgitation due to a structurally abnormal valve."


Do you have a citation for your claim that those with mechanical valves are more at risk for endocarditis? Or was this just something that you were "told"?
 
Hey Chuck

with respect to:
The recommendation for antibiotics prior to dental procedures is not exclusive to those with mechanical valves. It is recommended for all patients with prosthetic valves, biological and mechanical.

I was anecdotally told by my surgeon that whenever the cardiac endothelia is cut or compromised by disease (such as scarlet fever) that antibiotic cover was recommended for all patients undergoing high risk dental procedures (curiously not usually extractions but mostly scale and clean procedures).

Again, anecdotally, I recall my first visit for a scale and clean after my 1991 OHS (it was I think 1993) my dentist noted my scar, asked and was immediately concerned and asked if I'd taken my antibiotic cover. When I said I'd forgotten about that he took me next door to the pharmacy and watched me drink 2g of amoxicillin. He asked me to then be aware of any issues in the coming weeks.

So even back then this was known and we did have antibiotics then too (even in Australia).

There are many threads here about the topic, so I'll leave that to the curious. I thought the issue was well settled. Apparently there is still misinformation or disagreement out there.
 
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Hi

Apparently mechanical valves are prone to infections and with the number of infections I’ve had so far they thought she would be safer.

interestingly I had thought that it was the opposite and that mechanical was the go to because at least there the only place an infection can take hold is in the stitching ring before endothelisation.

So I thought I'd search for some studies because (just like every topic) guidelines and views appear to be regionally specific

https://pubmed.ncbi.nlm.nih.gov/20036573/
Objective: In the surgical treatment of acute aortic valve infective endocarditis (IE), the long-term outcome depending on the choice of valve replacement remains uncertain. We aimed to compare the impact on 5-year mortality of use of three types of implanted valves: bioprosthesis (heterograft), mechanical prosthesis and homograft.
Results: Bioprostheses were implanted in 31 patients (18.6%), homograft in 27 (16.2%) and mechanical valves in 109 (65.2%). Patients with bioprothesis had a higher 5-year mortality risk than patients with mechanical prosthesis (adjusted hazard ratio (HR) 2.39, 95% confidence interval (95% CI), 1.09-5.21; p=0.029), particularly in patients < or =65 years old (adjusted HR 4.14 (1.27-13.45), p=0.018) but not in patients >65 years old (adjusted HR: 1.45 (0.35-5.97), p=0.60). Five-year mortality risk did not differ between patients with homografts and those with mechanical prostheses (HR 0.46, 95% CI (0.15-1.42), p=0.18).
Conclusions: A bioprosthetic valve used for aortic valve IE replacement may be associated with lower overall 5-year survival than the use of a mechanical valve in patients up to 65 years old. Further studies are needed to explain these results.

I don't like that conclusion for bio

To support my view above this PDF link: https://www.annalsthoracicsurgery.org/article/S0003-4975(14)01047-9/pdf

However, in the setting of active IE, there is disagreement about the best prosthesis to avoid recurrent infection. Although biologic or mechanical prostheses are used in active aortic valve IE, some surgeons advocate the use of homograft valves, particularly for prosthetic valve endocarditis and for patients with root abscesses

lastly from this pdf link: https://www.jtcvs.org/article/S0022-5223(19)35075-5/pdf

It is concluded that the allograft valve is the valve of choice when aortic valve replacement is required for active endocarditis. (J THoRAe CARDIOVASC SURG 1992; 103:130-9)

While some may aruge these last two citations are older the top one showed similar outcomes for homograft and mechanical and is the much more recent study.

So its hard to find any citation from actual research on the matter which supports bioprosthesis as being the "go to" choice for a good outcome.

HTH
 
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