how to make a new heart?

[Evgenii]

Hello to the community of strong people who voluntarily decided to cut their body in half. I am 44 years old and I have known about my bicuspid aortic valve for 8 years. I also have 2 implants in my spine and other surgeries were also done by me. 3 months ago, the average pressure gradient increased to 38 and one of the hospitals concluded that a valve replacement was needed, but other hospitals continued to insist that a replacement was not yet necessary. I was offered the Ozaki procedure as a treatment and I began to look for other surgeons and ask their opinions about it. As a result, after 3 months, I found out that my fibrous ring 28-30 mm is too big and the Ozaki procedure is not the best choice for me. I don’t know what happened to me because of the stress from such news or I worked out too much in the gym and pool, but the aorta has now also grown from 41 to 43 mm and now I don’t know what to do

 

[Chuck C]

Welcome to the forum Evgenii.

now also grown from 41 to 43 mm and now I don’t know what to do

Sorry to hear this. Your situation is similar to mine, only I was about 9 years older and my aneurysm was not as large as yours. I opted for a mechanical valve, as I did not want any future surgeries. Even though my aneurysm was not at the threshold to require replacement, my surgeon knew that I wanted to be one and done, so he made a decision once he got a look at my aorta to replace it. When the valve is replaced and part of the connecting aorta as well, it is called a Bentall Procedure. It is a common procedure and many of us here have had it.

With an aneurysm of 43mm, I would strongly recommend going with a surgeon who is onboard to take care of that at the same time he takes care of your valve. At age 44, the guidelines call for a mechanical valve to give you the best chance at having a normal lifespan. However, this is a personal choice that each of us must make, in consultation with our surgeon and cardiologist.

You should know that the Bentall procedure is routine at any competent high volume hospital and the outcomes are excellent. There was even a study which found that those who get a Bentall Procedure have the same life expectancy as someone who has not had valve surgery.

Also, it sounds like you are very physically active. I was physically active before my procedure and, once I had recovered fully from surgery, I was able to resume all of my physical activities, including running, lifting, biking and martial arts.

Best of luck in your valve replacement journey.

 

[Evgenii]

Welcome to the forum Evgenii.


Sorry to hear this. Your situation is similar to mine, only I was about 9 years older and my aneurysm was not as large as yours. I opted for a mechanical valve, as I did not want any future surgeries. Even though my aneurysm was not at the threshold to require replacement, my surgeon knew that I wanted to be one and done, so he made a decision once he got a look at my aorta to replace it. When the valve is replaced and part of the connecting aorta as well, it is called a Bentall Procedure. It is a common procedure and many of us here have had it.

With an aneurysm of 43mm, I would strongly recommend going with a surgeon who is onboard to take care of that at the same time he takes care of your valve. At age 44, the guidelines call for a mechanical valve to give you the best chance at having a normal lifespan. However, this is a personal choice that each of us must make, in consultation with our surgeon and cardiologist.

You should know that the Bentall procedure is routine at any competent high volume hospital and the outcomes are excellent. There was even a study which found that those who get a Bentall Procedure have the same life expectancy as someone who has not had valve surgery.

Also, it sounds like you are very physically active. I was physically active before my procedure and, once I had recovered fully from surgery, I was able to resume all of my physical activities, including running, lifting, biking and martial arts.

Best of luck in your valve replacement journey.

thank you for your kind words
where can i read about the quietest mechanical valves?
Does warfarin therapy cause complications such as hemorrhoids and others?
what is known about J-Sternotomy and how much better is it than the classic approach
Should I look for a surgeon who will install a biological valve or do plastic surgery?

 

[pellicle]

Good Morning

where can i read about the quietest mechanical valves

Here's the thing I've observed in the years I've participated here: mechanical valve noise is highly individual, there is apparently no relible correlation between valve brand and noise, noise is louder in the first months after surgery (when everything is still inflamed).

My guidance is pick the valve with the longest history , however there is really nothing between them. I suggest you read this post and the linked study

https://www.valvereplacement.org/threads/aortic-valve-choices.887840/page-2#post-902334

Best wishes

 

[Chuck C]

where can i read about the quietest mechanical valves?

It seems to vary person to person. I have a St Jude and mine is very quiet. I rarely hear mine unless I take deep breaths. Others report that they can hear their St Jude. Same with On-x. Some report that it is quiet and others find theirs is loud. Even for those who can hear their valve, it seems that the vast majority report that they get used to it.

Does warfarin therapy cause complications such as hemorrhoids and others?

I've been on warfarin almost four years and I've never experienced anyone reporting that it causes hemorrhoids. If one has a bleeding hemorrhoid and is on warfarin, it might bleed more compared to if they were not on warfarin, but the warfarin would not likely be the cause of the hemorrhoid.

what is known about J-Sternotomy and how much better is it than the classic approach

There are pros and cons to the minimally invasive incisions. There will be a quicker healing time of the surgical opening, but the negative trade off is that the surgeon has limited access. Sometimes once they get in there they discover over things that need to be done and need to to a full sternotomy to get better access. That means more time on the heart and lung machine, which is not good. In that you have a 4.3cm aneurysm, you will probably be getting a Bentall Procedure, with part of your aorta replaced. It might be possible for your surgeon to do a Bentall through such a small opening, if he is extremely skilled, but if it were me, I would opt for the full sternotomy so that he has better access. Personally, I had a mini-sternotomy and I did get a Bentall Procedure, but I suspect that if my surgeon knew going in that he was going to do a Bentall, he might have opted for the full sternotomy. I've never asked him that question.

Should I look for a surgeon who will install a biological valve or do plastic surgery?

I'm not sure what country you are in, but in the US your surgeon will likely give you a tissue valve if that is what you want. They do that all the time for patients in their 40s, even though it is not recommended by the guidelines. The patient's choice trumps the guidelines.

 

[dornole]

thank you for your kind words
where can i read about the quietest mechanical valves?
Does warfarin therapy cause complications such as hemorrhoids and others?
what is known about J-Sternotomy and how much better is it than the classic approach
Should I look for a surgeon who will install a biological valve or do plastic surgery?

I just had mitral valve replacement in October, chose mechanical because that’s the guideline and I don’t want repeated surgeries. I am 56. So I personally would not look for someone to do a bio valve when you are 44 unless there is a good reason for example you have a disease that means warfarin would be bad for you - a bleeding disorder,or maybe a mental health or substance use disorder that means taking pills daily and testing every couple weeks would be a challenge for you.

I haven’t noticed any effects from warfarin. No hemorrhoids. In fact I bruise less than when on aspirin. Small cuts seem exactly the same.

You do need to test your INR and keep it in range because if your blood is not anticoagulated properly you can have bleeds or strokes. It is not super hard but you can’t be lackadaisical about it.

I had the full sternum version of OHS and honestly I don’t think that incision was the biggest issue. More just the heart needing to recover and the lungs needing to recover from being on the machine. I was Tylenol only long before I left the hospital and basically no pain meds at all once home. 12 weeks out sternum is a non issue. Personally I chose a surgeon who was capable with a lot of experience, got the valve that he and the national guidelines recommended and let him put it in the way he thought would have the best result.

I think the Bentall advice you got makes sense though I do not have aortic issues

Hope this helps

 

[Evgenii]

Guys, thank you all for your answers! Do any of you smoke cigarettes or did you smoke before the surgery? How are things going with that? Will it be possible to smoke after they allow you to walk?

 

[Evgenii]

ascending aorta 43 aortic root at the level of the sinuses 40
aortic walls are thickened
this is what you called an aneurysm?

 

[Evgenii]

I've been on warfarin almost four years and I've never experienced anyone reporting that it causes hemorrhoids. If one has a bleeding hemorrhoid and is on warfarin, it might bleed more compared to if they were not on warfarin, but the warfarin would not likely be the cause of the hemorrhoid.

I have periodic episodes of hemorrhoids and I remember how during the times of covid from xarelta they were larger and more voluminous, this worries me

 

[Evgenii]

I had the full sternum version of OHS and honestly I don’t think that incision was the biggest issue. More just the heart needing to recover and the lungs needing to recover from being on the machine. I was Tylenol only long before I left the hospital and basically no pain meds at all once home. 12 weeks out sternum is a non issue.

I have several herniated discs in my thoracic spine and I don't know how a full sternotomy will affect this.

 

[Moddeydhoo]

Guys, thank you all for your answers! Do any of you smoke cigarettes or did you smoke before the surgery? How are things going with that? Will it be possible to smoke after they allow you to walk?

I was quite a heavy smoker but gave up after surgery. Partly because I couldn't smoke in hospital obviously and I was discharged I made the conscious decision not to smoke because I'd gone without smoking for long enough to get over the adiction.

 

[Moddeydhoo]

I was quite a heavy smoker but gave up after surgery. Partly because I couldn't smoke in hospital obviously and I was discharged I made the conscious decision not to smoke because I'd gone without smoking for long enough to get over the addiction.

I still miss them though when I'm having a beer and playing pool.

 

[3mm]

Evgenii - Since you are young and physically active, I'm sure everything will go well for you!

I have several herniated discs in my thoracic spine and I don't know how a full sternotomy will affect this.

Ask your surgeon and medical team. Some patients have trouble getting in and out of bed after surgery since core muscles have been injured by the surgery. Perhaps this will be more troublesome and painful in conjunction with your herniated discs? This may require some advance planning for your care when you return home. For example, an electric recliner chair so your spine doesn't get strained when you sit up.

Does warfarin therapy cause complications such as hemorrhoids and others?

I periodically have hemorrhoids bleed; for me it is no worse than before I started taking Warfarin. I have always had some nasal bleeding during cold weather (dry air when the temperatures are well below freezing); this also is no worse since I started using Warfarin.

what is known about J-Sternotomy and how much better is it than the classic approach

The "best approach" depends on the surgeon, your body, and what needs to be done. There is no general answer.

I found a good, experienced surgeon at Mayo Clinic in Minnesota, USA. He does many minimally invasive procedures; however, he said a full sternotomy was the best approach for me because he needed to repair my mitral valve as well as install a mechanical On-X aortic valve. I accepted his plan because he is the expert, and I wanted him to be able to quickly perform a high-quality surgery. I did have another surgeon look at me, and he also planned for a full sternotomy.

My full sternotomy has not been any problem for me. I did have to wait 90 days before I started lifting heavy objects, but that is a temporary issue that healed during the next 6 months. I never had any pain in my sternum.

IMPORTANT POINT: Minimally invasive procedures, mini-sternotomies, etc., are not a cure all. They have their own potential problems. For example, a friend had permanent damage to a nerve that controls his diaphragm during his minimally invasive surgery, so his right lung will never fully inflate.

 

[Chuck C]

ascending aorta 43 aortic root at the level of the sinuses 40
aortic walls are thickened
this is what you called an aneurysm?

Yes. The 43 is a measurement in mm of the diameter of your aorta. It is sometimes also expressed in cm, in which case yours would be 4.3. Normal diameter of your ascending aorta would be about 32mm. So, once it becomes significantly wider than normal, it is considered an aneurysm. Aortic aneurysm is very common for individuals with BAV. (bicuspid).
What you really want to avoid is getting your aortic valve replaced, then needing to go back in for a reop due to your aneurysm reaching a dangerous size, so it is generally better to repair the aneurysm when they replace your valve. You want to minimize the number of times that you have OHS. Ideally, a person your age would get a mechanical valve and never need another OHS.

 

[Chuck C]

I have several herniated discs in my thoracic spine and I don't know how a full sternotomy will affect this.

That's a good question. This is something that I don't expect that anyone on the forum would be able to answer. Make sure you have this discussion during your surgical consultation.

 

[Chuck C]

Guys, thank you all for your answers! Do any of you smoke cigarettes or did you smoke before the surgery? How are things going with that? Will it be possible to smoke after they allow you to walk?

I know that this is easier said than done, but I would strongly encourage you to quit smoking prior to surgery and do your best to stay off of them. Your body will be healthier going into surgery if you stop smoking. Also, you will be having a challenging week of recovery after OHS, and you really don't want to also be dealing with nicotine withdrawal.

 

[Evgenii]

Нормальный диаметр вашей восходящей аорты будет около 32 мм. Таким образом, как только он становится значительно шире нормы, это считается аневризмой. Аневризма аорты очень распространена у людей с BAV. (двустворчатым).
Чего вы действительно хотите избежать, так это замены аортального клапана, а затем необходимости вернуться на повторную операцию из-за того, что ваша аневризма достигла опасного размера, поэтому, как правило, лучше восстановить аневризму, когда вам заменят клапан.

It all started with the fact that someday they will put a new pig valve through my artery (tavr) and now I have to go and saw it in half, although I feel good and go to the pool and the gym. I feel deceived by medicine

 

[pellicle]

I feel deceived by medicine

Feel deceived by corporate marketing...

You really don't want TAVR (real life is not SciFi)

 

[Evgenii]

I continue reading the forum and another question has come up. Are there any statistics on patients with a mechanical valve who required other non-heart surgery and what is the percentage of negative events due to refusal of warfarin for surgical interventions?
Is MRI possible with any mechanical valves?

 

[pellicle]

Hi

Are there any statistics on patients with a mechanical valve who required other non-heart surgery

no, because its a non issue ... I've had 3 (two serious) surgeries after my mech valve and we just follow the process of restoring coagulation and then at a particular time returning to Anti Coagulation Therapy (ACT)

and what is the percentage of negative events due to refusal of warfarin for surgical interventions?

by refusal do you mean "the planned short term withdrawl of ACT (warfarin) for that intervention". Refusal is when the patient say no, I won't take that

Is MRI possible with any mechanical valves?

yes, I have no idea where this idea that it can't comes from, perhaps 1979 when there weren't any MRI's?

returning to TAVR

https://www.sts.org/press-releases/...60-years-choose-tavr-over-savr-worse-outcomes

From a pool of 37,011 patients, the study identified 2,360 patients under the age of 60 years who underwent these procedures with 22% receiving TAVR and 78% SAVR. By 2021 almost half of patients younger than 60 years were receiving TAVR rather than SAVR. The research team followed these patients for a median time of 2.4 years after TAVR and 4.9 years after SAVR to assess their outcomes.​

​

The primary focus was on 5-year survival rates. Secondary outcomes included rates of reoperation, infective endocarditis, stroke, and hospital admissions for heart failure. Propensity score matching ensured a fair comparison of 358 pairs of patients, balancing factors such as age, major health conditions, hospital volume, and urgency.​

​

While the 30-day mortality rates were similar (0.2% for SAVR vs. 0.4% for TAVR), the 5-year survival rate was significantly better after surgery compared to TAVR (98% vs. 86%, p < 0.001). For secondary outcomes, there was no significant difference between the two groups.​

five year survival rate... fmd ... that's not long mate. Yet as they point out people are clamouring for it ... so either its misrepresented massively by Cardiologists wanting to get in on the fun (ghouls) or patients who are seeking to not suffer (cowardly fools).

However we do live in a world where being a neurotic weakling is rapidly becoming the norm for those who are biologically identifiable as male.

HTH