2nd AVR

[Keithl]

Not sure if you are addressing me still, but no we did not pick the surgeon. Mathias' employer footed the bill for the whole trip--surgery, pre OP and post OP testing, hotel, flights, food...the whole shebang. Svensson was assigned to the case.

Wow, that is some great insurance, while my insurance covered all the medial costs it was up to me to pay transportation and lodging. And while I was initially assigned a surgeon I had a second opinion from another Cleveland surgeon and ultimately I could have changed. Roselli is probably the guy at Cleveland that does these in his sleep, as this is all he does AOrtic repair/replace and aneurysm. I ultimately stayed with Unai as he impressed me since he specializes in complex reporperations and heart/lung transplants. When I wa there everyone was raving about Unai and how good he is, but my guess is they say that about all their surgeons. Again best of luck!

 

[Keithl]

Thank you very much. Having read some of your replies in other threads, I am grateful that you have taken the time to reply to mine. You hold a wealth of knowledge that I am happy to have in my corner, however I do not envy the curve balls that have given you the knowledge on this particular topic. Your ability to share of your experiences helps me so much.

There are so many people on this forum that have had multiple surgeries or have had mechanical valves for 20+ years without issue that you and he should not worry. It is part of why I chose mechanical as I wanted to be done with this and will deal with sticking my finger once a week and taking warfarin vs. another surgery. My surgery was 15 weeks ago and I feel like it never happened, life is back to normal and the self testing has been a no brainer.

 

[Duffey]

Why do you think they goofed if the valve had a premature failure or issue?

I think Warwick has answered your question.

 

[Duffey]

Hello lovely folks,

I am the Fiancee and caretaker of a wonderful human undergoing his 2nd AVR on Friday, August 9th. A little background on us...

Patient is a 25y.o male, no history of heart disease, very healthy, no history of drug or alcohol abuse. Diagnosed with a moderate leaking bicuspid aortic valve, and ascending aortic aneurysm in September of 2018...never had any knowledge of this condition prior to then. He has also been through many (5) orthopedic surgeries as a teenager, has a history of high blood pressure, but has never been urged to seek attention for that as he is "too young" for heart problems.

December of 2018 we flew from Washington State to the Cleveland Clinic to have the aneurysm fixed and the valved repaired or replaced. The Christmas Story came to life as we spent Christmas in the hospital! The operation went well, they were unable to repair the valve, so replaced it with a porcine tissue valve per the patient's request. He was in the ICU for 2 days then moved to step down for an additional 5 days and released to our hotel for 2 days. Then we made the horrible flight home. All was good.

Obviously, there are a lot of follow up appointments, and at the one with his cardiologist, they found a moderate to severe para-valvular leak. The valve he had put in place was needing replacement after only 7 weeks of recovery. More testing came, and they attempted to plug the leak with a non-invasive procedure back in June. That was not successful, so another sternotomy is scheduled for this week, where they will replace the failing valve with the On-X valve, and possibly have to redo the aortic graft as well.

I know all patients are different, which is why I've come here to seek experiences of other patients that have undergone a second AVR (or similar) and what their recovery process was like. Was recovery the same length as the first? Was anyone else really nervous watching their loved one go through another surgery all the while staying strong and focused so their loved one needn't worry? Give me the deets, please! Maybe I just need some support, maybe I need answers, maybe I need to research more.

Thank you for your time,
Jill

Jill, you mention that he has a bicuspid aortic valve and had an aortic aneurysm. You may want to learn more about BAVD and its relation to connective tissue disorder. Do you mind disclosing what type of orthopedic surgeries he underwent? I ask because our grandson was born with a bicuspid valve, slightly enlarged aorta, and orthopedic problems. He has been monitored by a pediatric cardiologist for ten years and has undergone three orthopedic surgeries. Sometimes all these issues are related to a genetic chromosomal abnormality and it might be in your SO’s best interest to be aware of it going forward since he is only 25 years old. Good luck and best wishes.

 

[LoveMyBraveHeart]

Jill, you mention that he has a bicuspid aortic valve and had an aortic aneurysm. You may want to learn more about BAVD and its relation to connective tissue disorder. Do you mind disclosing what type of orthopedic surgeries he underwent? I ask because our grandson was born with a bicuspid valve, slightly enlarged aorta, and orthopedic problems. He has been monitored by a pediatric cardiologist for ten years and has undergone three orthopedic surgeries. Sometimes all these issues are related to a genetic chromosomal abnormality and it might be in your SO’s best interest to be aware of it going forward since he is only 25 years old. Good luck and best wishes.

We have looked into this and it's unlikely that a connective tissue disorder is the case. His orthopedic surgeries were injury related...football almost took both of his legs as a pre-teen in high impact tackles, the arch of his foot collapsed and needed reconstruction, and he smashed some hand bones in a heated teenage anger fueled moment. Thank you for the suggestion though, I have thought about and researched this as well! I am hoping it is not connective tissue issues, that is a difficult battle to endure. I hope your grandson fairs well through all of that--I'm glad he has a grandparent like you to look out for him!

 

[LoveMyBraveHeart]

Hi Jill , just a quick word of encouragement for you both. I also had a second surgery to replace my valve to a onx valve. There was only 10 months in between the two operations and knowing what I was going into the second time round made the procedure and recovery less stressful for me . I’m certain you’re fiancé will be fine and you will soon be able to look back and enjoy the rest of your lives together. All the best Paul ❤

Thank you! I'm glad to hear your second operation went well. We were certainly not expecting another sternotomy so soon, but relieved to know others have been through the same thing and have lived to see it as part of their distant past. The heart is incredible...complex and strong, yet delicate and fragile. I'm amazed at what a machine it truly is with all the research I do. And how your body compensates for deficiencies. Amazing!

 

[LoveMyBraveHeart]

Part of a good recovery is a good support system. From reading your posts, and seeing how much you love him, I don't think he could have a better, stronger, more loving support system.

I appreciate that. I am so lucky to have found a best friend to journey life with. He is amazing and teaches me things everyday. I'm hoping for many, many happy years together!

 

[Duffey]

We have looked into this and it's unlikely that a connective tissue disorder is the case. His orthopedic surgeries were injury related...football almost took both of his legs as a pre-teen in high impact tackles, the arch of his foot collapsed and needed reconstruction, and he smashed some hand bones in a heated teenage anger fueled moment. Thank you for the suggestion though, I have thought about and researched this as well! I am hoping it is not connective tissue issues, that is a difficult battle to endure. I hope your grandson fairs well through all of that--I'm glad he has a grandparent like you to look out for him!

Thanks, experience is a great teacher! I have a bicuspid aortic valve, one son has an aortic bicuspid valve and our grandson has an aortic bicuspid valve so I’m keenly aware of the genetic component and have insisted upon diagnostic echos for all our children. It’s difficult to accept, but since you’ve done the research then you know that your fiancée may face future surgeries, that this might not be the end of it.

 

[Superbob]

Jill: So wonderful to read of your love for your guy and all the supportive, informative responses you have received from the vr.org community. I am BAV also, but somehow escaped the big OHS until I was 63 (though in my 20s an internist had told me all this might come along). The surgery was a great success, but now at age 77 a big and growing aneurysm of the ascending aorta has emerged, and two great surgeons have urged me to take it out. So OHS2 will be in September. Although BAV is sometimes associated with connective tissue disorder I've never been told I have that. I think BAV alone is enough to predispose you to aneurysms. Anyway, I tell you all this in order to wish your Brave Heart a 100% successful surgery, and the two of you a long and happy life together with the strength and determination to handle any further challenges that might come along.

 

[Agian]

I appreciate that. I am so lucky to have found a best friend to journey life with. He is amazing and teaches me things everyday. I'm hoping for many, many happy years together!

You sound like a wonderful lady.

 

[LoveMyBraveHeart]

I think BAV alone is enough to predispose you to aneurysms. Anyway, I tell you all this in order to wish your Brave Heart a 100% successful surgery, and the two of you a long and happy life together with the strength and determination to handle any further challenges that might come along.

I have also learned a BAV predisposes you to an aneurysm by all of the surgeons and cardiologists we've seen (at the last "experimental" type surgery in June, he had 23 doctors present! ), none of which brought up anything about a connective tissue disorder. In any case, I wish you all of the luck in September! I hope you have the support system you need and deserve. I wish you the very best and hope to hear of a successful surgery and recovery come October!

 

[LoveMyBraveHeart]

You sound like a wonderful lady.

Thank you very much. Sorry to be so mushy about Mathias, I get that way sometimes!!

 

[LoveMyBraveHeart]

I have an additional question...at the Pre op this time around, the hospital staff had recommended and started planning for a home nurse for the days following discharge. Is this normal? After the last surgery, Mathias walked out of the hospital a week after OHS, we went back to our hotel for two days, and then flew home where I was his primary care giver. I am unsure if this hospital has different protocols than Cleveland, but I found it unusual that they would push for us to have a home nurse, not to mention worried me about the additional cost as I do not believe that is something insurance always covers. Kind of sent me into a tailspin of negativity that he will be worse off this time than last time.

Thank you all in advance, and for all of your continued support.

 

[Paul1972]

I have an additional question...at the Pre op this time around, the hospital staff had recommended and started planning for a home nurse for the days following discharge. Is this normal? After the last surgery, Mathias walked out of the hospital a week after OHS, we went back to our hotel for two days, and then flew home where I was his primary care giver. I am unsure if this hospital has different protocols than Cleveland, but I found it unusual that they would push for us to have a home nurse, not to mention worried me about the additional cost as I do not believe that is something insurance always covers. Kind of sent me into a tailspin of negativity that he will be worse off this time than last time.

Thank you all in advance, and for all of your continued support.

Hi Jill , my second surgery was just as straight forward as my first one and In fact I was home after 5 days, I was in a week after my first.

I have an additional question...at the Pre op this time around, the hospital staff had recommended and started planning for a home nurse for the days following discharge. Is this normal? After the last surgery, Mathias walked out of the hospital a week after OHS, we went back to our hotel for two days, and then flew home where I was his primary care giver. I am unsure if this hospital has different protocols than Cleveland, but I found it unusual that they would push for us to have a home nurse, not to mention worried me about the additional cost as I do not believe that is something insurance always covers. Kind of sent me into a tailspin of negativity that he will be worse off this time than last time.

Thank you all in advance, and for all of your continued support.

Hi Jill my surgery and recovery was

I have an additional question...at the Pre op this time around, the hospital staff had recommended and started planning for a home nurse for the days following discharge. Is this normal? After the last surgery, Mathias walked out of the hospital a week after OHS, we went back to our hotel for two days, and then flew home where I was his primary care giver. I am unsure if this hospital has different protocols than Cleveland, but I found it unusual that they would push for us to have a home nurse, not to mention worried me about the additional cost as I do not believe that is something insurance always covers. Kind of sent me into a tailspin of negativity that he will be worse off this time than last time.

Thank you all in advance, and for all of your continued support.

Hi Jill, I was out of hospital a day earlier than my first surgery and back on a building site within 6 weeks ,so can’t see no reason why Mathias would be any worse off than after his first surgery . Best wishes for Friday xx

 

[pellicle]

Thanks, experience is a great teacher! I have a bicuspid aortic valve, one son has an aortic bicuspid valve and our grandson has an aortic bicuspid valve so I’m keenly aware of the genetic component and have insisted upon diagnostic echos for all our children. It’s difficult to accept, but since you’ve done the research then you know that your fiancée may face future surgeries, that this might not be the end of it.

I'm not sure if this is any use, but when I was a younger man before it was even considered to be genetically linked I was sure it was. That's a big part of what drove me in the choice of degree (I wanted to contribute to making this less of an issue for my own children because raising a family was one of my life goals). Over time I saw that actually having BAV had helped me more than it had hindered me. It gave me a greater real view of the value of my health from a young age and a drive to maintain as well as an acute understanding of my actual mortality.

These things led me to where I am and now as an older man I'm much healthier than my cousins (born without such issues) and have lived a far fuller life than any of my family.

In about 2009 I watched a documentary about James Watson (one of the identifiers of DNA) and found that he had a son who had an inheritable disease. I instantly suspected that this drove him in his career too. An interview (later in that doco) with him and his wife (who spoke of their sone) confimed this suspicion by their body language and unspoken reactions.

So @LoveMyBraveHeart I am sure that what may be thought of as a "weakness" can become a strength.

Best Wishes

 

[Protimenow]

When your hospital suggested home health care nursing, I think they were just covering their butts. They may have seen one young, concerned woman, who would have had to provide care for her post-op fiancee, and may have figured that you may need a break (or something). I think that you'll probably do fine without home health assistance - it'll still be available if you need it.

 

[carolinemc]

@LoveMyBraveHeart Sad that he had to go through it a second time so soon, but you have heard here, several have had second ones done for various of reasons. So glad he is doing better and he will be back soon. He is young and strong. So glad that both of you were vigilant and kept up with the progress from the first AVR. Being proactive in care is very important. Keep coming in for advice and answers to questions you and your fiancé might have. We are here for you. Hugs to both of you today.

 

[Agian]

Thank you very much. Sorry to be so mushy about Mathias, I get that way sometimes!!

No way. I think it's beautiful that two young people are so devoted to each other. Keep us in the loop and prepare us for your wedding so we can have a cyber party and drink each other under the iPad. You can check his INR the next day and tell us if the alcohol had any impact.

 

[tom in MO]

I have an additional question...at the Pre op this time around, the hospital staff had recommended and started planning for a home nurse for the days following discharge. Is this normal? After the last surgery, Mathias walked out of the hospital a week after OHS, we went back to our hotel for two days, and then flew home where I was his primary care giver. I am unsure if this hospital has different protocols than Cleveland, but I found it unusual that they would push for us to have a home nurse, not to mention worried me about the additional cost as I do not believe that is something insurance always covers. Kind of sent me into a tailspin of negativity that he will be worse off this time than last time.

Thank you all in advance, and for all of your continued support.

You say "hospital staff" not exactly what level of staff or what they mean by home nurse. Maybe the person is more familiar with older patients that may need additional care. Your surgeon and their nurse should be able to speak directly to whether or not home care is needed. Ask them.

 

[Zoltania]

By "home nurse," did they mean someone who comes and stays for hours and hours, or someone who just drops by? After I had my surgery, Kaiser sent a home nurse for a few brief visits, just to check my INR, check how I was healing, and review my medications. Maybe that's all they meant.