It is time... and hello again.

[themalteser]

Hello all,
It’s been such a long time since I last posted anything in this forum. I guess, I tried not to think about my condition that much and so I didn’t visit valvereplacement for a while.

I was diagnosed with a bicuspid aortic valve and an aortic root dilation of 46mm back in 2009, each year I was monitored for growth and leakage. Today, I visited a surgeon who said that my aorta, although it’s around 47mm, may benefit from the Pears procedure. He would like to operate by end of this year or beginning of next year.

I like to think that I am in control of the decision to operate, but it seems that I don’t really have much other choices. The only other choice is to wait until my aorta is 50mm and operate then, maybe it buy me some more time, but not sure how beneficial this is.

The surgeon mentioned that the procedure is done off pump. It was surprising to hear that my surgeon will drop the blood pressure to around 60 (the top number) and slightly cool the body! I don’t think I like what he is saying, but perhaps this is protocol for off-pump heart procedures. He was also mentioning a whole lot of possible negative outcomes such as, infections, inflammations, heart rhythm disorders and of course death. Again, I don’t like hearing all this stuff!

The surgeon is Dutch and I will be having my surgery in Amsterdam. He was thought by a British surgeon and he performed around 7 PEARS procedures so far. (Total PEARS worldwide is round 240). Again, I do have concerns about the experience, but he seems to be an excellent surgeon with a fantastic track record on other procedures. The inventor himself has also praised him and his skills as a surgeon, so I do feel reassured at the moment.

I don’t know how I feel. Part of me, I feel okay, but not sure whether I am in denial, somewhat I don’t really believe it. Part of me feels afraid as almost thinking, this is it! The news has not yet sunk in properly. I am also worried of course, will I be okay? Will i be in a lot of pain? Will my wife and children cope? And so on....

I just wanted to give you update all. Just like an old friend who hasn’t seen each other for a while, I do, of course, feel a bit ashamed of myself that I didn’t keep in touch. I do hope that I will be allowed to share my journey with you from now until after surgery.

Thank you.

 

[Protimenow]

I can't imagine anyone here NOT wanting to hear from you again (I certainly do).
It sounds like you're in good hands.
It also is encouraging that this is being off pump - many of us experience(d?) what is called 'pump head' or other descriptive term, about certain after-effects of being on the pump. It would be good to avoid being on the pump, if you can.
Have you found out about risks of heart damage, or other problems, if the aorta grows to 50mm? Will the heart walls thin much more? Will your heart be damaged by waiting? What are the physical issues if you wait for the aorta to get larger?

Good luck. I look forward to your updates.

 

[themalteser]

Thank you for your message, and for your kind words Protimenow. It’s also encouraging to hear that off-pump could be better than on-pump, but I don’t like what my surgeon was saying about the blood pressure and cooling. Sounds like I’d be nearly dead

You’re right; I did not inquire further about the benefits of waiting vs Having the surgery now. The surgeon told me that there are no benefits in waiting, and it’s preferable to have surgery when the measurements are below the threshold. I guess you’re right; there are other problems to think about with waiting!

Again, thank you very much for your reply. I look forward to keeping my updates here.

 

[Protimenow]

Thank you for your message, and for your kind words Protimenow. It’s also encouraging to hear that off-pump could be better than on-pump, but I don’t like what my surgeon was saying about the blood pressure and cooling. Sounds like I’d be nearly dead

You’re right; I did not inquire further about the benefits of waiting vs Having the surgery now. The surgeon told me that there are no benefits in waiting, and it’s preferable to have surgery when the measurements are below the threshold. I guess you’re right; there are other problems to think about with waiting!

Again, thank you very much for your reply. I look forward to keeping my updates here.

The low numbers for blood pressure and cooling probably ARE almost dead. But what about cooling your body way down, then putting you on heart/lung machine, and completely stopping your heart? 100 years ago (and maybe less), having no heartbeat was a definition of dead.

If the surgeons can repair your heart, with a low pressure and slow heartbeat, without putting you on the heart/lung machine (pump), this probably isn't a bad option. Your surgeon has done this before. He's probably fairly used to operating on a patient with these intionally induced factors. It may just come down to how much you trust your doctors.

From what you said, it looks like you'll be in pretty good hands.

 

[tom in MO]

Your aorta has not changed in 10 years. The trigger for this surgery seems to be a new device. Some questions you might want to ask:

• Why is the surgery needed before next year?
• What is the history of device failures and complications? How long has the device been successfully implanted and operational?
• Can the aorta continue to dilate, and if it does, will the device make it worse or less severe?
• Do people still need the replacement surgery sooner or later or does the device "cure" your dilation?
• Of the 7 procedures done by your surgeon, are they all successful, with success being defined as full recovery and cessation of dilation?
• Why this surgeon and not one with more practice with the procedure?

I'm pretty risk adverse when it comes to surgery. I've always admired those that had the bravery to try new surgical procedures since I don't have the courage to enter that realm.

Good luck. It's a hard decision that holds a lot of hope.

 

[carolinemc]

Hello all,
It’s been such a long time since I last posted anything in this forum. I guess, I tried not to think about my condition that much and so I didn’t visit valvereplacement for a while.

I was diagnosed with a bicuspid aortic valve and an aortic root dilation of 46mm back in 2009, each year I was monitored for growth and leakage. Today, I visited a surgeon who said that my aorta, although it’s around 47mm, may benefit from the Pears procedure. He would like to operate by end of this year or beginning of next year.

I like to think that I am in control of the decision to operate, but it seems that I don’t really have much other choices. The only other choice is to wait until my aorta is 50mm and operate then, maybe it buy me some more time, but not sure how beneficial this is.

The surgeon mentioned that the procedure is done off pump. It was surprising to hear that my surgeon will drop the blood pressure to around 60 (the top number) and slightly cool the body! I don’t think I like what he is saying, but perhaps this is protocol for off-pump heart procedures. He was also mentioning a whole lot of possible negative outcomes such as, infections, inflammations, heart rhythm disorders and of course death. Again, I don’t like hearing all this stuff!

The surgeon is Dutch and I will be having my surgery in Amsterdam. He was thought by a British surgeon and he performed around 7 PEARS procedures so far. (Total PEARS worldwide is round 240). Again, I do have concerns about the experience, but he seems to be an excellent surgeon with a fantastic track record on other procedures. The inventor himself has also praised him and his skills as a surgeon, so I do feel reassured at the moment.

I don’t know how I feel. Part of me, I feel okay, but not sure whether I am in denial, somewhat I don’t really believe it. Part of me feels afraid as almost thinking, this is it! The news has not yet sunk in properly. I am also worried of course, will I be okay? Will i be in a lot of pain? Will my wife and children cope? And so on....

I just wanted to give you update all. Just like an old friend who hasn’t seen each other for a while, I do, of course, feel a bit ashamed of myself that I didn’t keep in touch. I do hope that I will be allowed to share my journey with you from now until after surgery.

Thank you.

I have heard of this procedure for the last several years. It has a high success rate due to the fact the body is cooled to shut down the heart to make surgery easier on the patient, with less complications. It has been done in several countries, including the US. It is still considered testing but soon it will be the norm all over the world. Sine the surgeon you have is skilled and knowledgably, I would take it. Just let us know how it goes. Have a family member post for you to keep up updated. Good luck.

 

[Duffey]

Glad to see you back with us, @themalteser, but I do wish your return was not tied to your now needing surgery. Best wishes going forward. Mary

 

[themalteser]

@Protimenow - thank you for your reassurance, I really appreciate. It’s true, I need to see things from a different lens.

@tom in MO - thanks for your message, I have indeed emailed my surgeon to ask him some of the questions you’ve put in your message, very helpful. It’s also true that my aorta has been long time stable, I did ask the question and The reasoning behind it is that “waiting is not beneficial” and for this surgery they rather operate below the threshold. So far the procedure seems promising, I.e no dilutions and evidence of wall thickening, but yes it’s not been performed as long as the valve sparring procedure with thousands of patients evidence. This is also my anxiety,

@carolinemc thank you for your message and reassurance, absolutely, I will ask my wife to keep updating when time comes.

@Duffey glad to hear from you! Thank you for your message, yes not the greatest news to hear, not sure it fully sunk in to be honest, what I know is that the thought of having surgery does make me feel a bit down, but I’ll hang in there and keep on updating here and talking to as many people as possible.

@pellicle - where are you? I like reading your comments you’ve helped me a lot to get over my anxieties befor, so I look forward to hearing from your opinion also....

Again, thank you all.

I do have another question, maybe a bit of a silly question. Do you think it’s best to have surgery in winter or summer? I mean does the cold make the chest more sore, or perhaps sneezing etc? Or does the heat make it feel worse?

 

[pellicle]

Hi

@pellicle - where are you? I like reading your comments you’ve helped me a lot to get over my anxieties befor, so I look forward to hearing from your opinion also....

I'm glad that anything I've said has helped. Currently I'm back in Australia, and behaving appropriately:
http://cjeastwd.blogspot.com/2019/09/morning-ride-across-range.html
I'm probably not going to be doing more than visiting Finland as anythying more than a tourist (which always gives me a strong twinge of sadness)

I don't have any experience with the PEARS but I don't think many / any in the medical profession do either. On the surface of it it appears to be an excellent solution but there (of course) remain questions about its long term viability. These may prove groundless but until we have evidence we just won't know. There are known unknowns and unknown unknowns. Some of the known unknowns that occur to me are:

• what is its resistance to infection (you know, like the one I got from which I narrowly avoided a reop had it continued to sink down and infect my prosthesis). Indeed we don't know if it has (some PET scan raised that possiblity) and so I remain on antibiotics (which appear to be either working or its not there ... we can only know in one way)
• possibilty that the support simply allows the aneurysm to strech up further requiring a perhaps more complicated removal surgery (scar tissue will likely grow to it like ivy to a brick wall
• long term viability of the materials used in the 3D printing
• ...

I do have another question, maybe a bit of a silly question. Do you think it’s best to have surgery in winter or summer? I mean does the cold make the chest more sore, or perhaps sneezing etc? Or does the heat make it feel worse?

myself I'd prefer a temperate time were it in Australia but if you have heated homes (like Europe tends to) then that may make winter fine too ... the shorter days are perhaps more conducive to "sleep ins" and "early evenings" (and resting in general), although (as in the case of Finland) ice and snow may provide quite dangerous hazards.

Sneezing ... you want to avoid that for sure, but colds, dust and even "sun sneezing" can occur still.
Myself I'd not over think it, I never have done with surgery. I've just (once the case has been made) accept what guidance the surgeon has with respect to all things including timing.

Anyway, its always good to see you again too ;-)

 

[nobog]

Cooling the body is nothing new, first done in the 1960's.

Google Walt Lillehei or https://en.wikipedia.org/wiki/C._Walton_Lillehei

 

[Duffey]

I’d try to have the surgery in spring if I was having it performed in the States. Flu season will be about over so hospitals are less busy plus the weather is generally more conducive to walking . . . not too hot, not too cold!

 

[LoveMyBraveHeart]

I do have another question, maybe a bit of a silly question. Do you think it’s best to have surgery in winter or summer? I mean does the cold make the chest more sore, or perhaps sneezing etc? Or does the heat make it feel worse?

Mathias had one surgery in the dead of winter (end of December) and one in the dead of summer (mid august). Both in the US. I think it depends on personal preference...he is not a heat person at all, and has been miserable this time around if temps go about 75 or so. During the winter last year though, he struggled with getting too chilly when walking or just somewhere that wasnt climate controlled and would uncontrollably shiver. I think he had more bone pain (sternum) in the winter, and more muscle pain this year, during the summer. Both ways, it's a crummy recovery, but can be done as demonstrated by so many tough people on this forum. Best of luck to you!!

 

[Protimenow]

One quick thought about when to have your surgery -- perhaps you can see if the 'A' team of assistants who do much of the background stuff in O.R. and recovery take vacations - so you can catch them when they're back, refreshed, and ready to work. (Not that a 'B' team wouldn't be as good).

I had my OHS in late August (August 21), and things went well. As always in Southern California, I'm sure it was a very hot late summer, but I don't recall any issues with surgery or recovery.

 

[user 16827]

Currently I'm back in Australia, and behaving appropriately:
http://cjeastwd.blogspot.com/2019/09/morning-ride-across-range.html

I'm lovin the scooter vids Pell

I wish my roads were as free from traffic as yours are

You live in a beautiful area

 

[user 16827]

I do have another question, maybe a bit of a silly question. Do you think it’s best to have surgery in winter or summer? I mean does the cold make the chest more sore, or perhaps sneezing etc? Or does the heat make it feel worse?

Hi, i'm UK based too

I had my surgery August, i found the weather was great to get out and walk and potter
around the garden, the sunshine & fresh air generally makes people feel good.

Best of luck

 

[themalteser]

@pellicle - good to hear from you and thank you for your post! Love it, Maltesers!! The place where you live seems so beautiful from the video you shared! What a great trip... You live in one of the most beautiful countries in the world.

I totally agree with you all, although I feel that I am in good hands, there are so many unknowns with this surgery and its hard to make the right decision. I don't want to be a research dummy at the end. Based on many of your helpful posts I have asked my surgeon that during my next CT scan, we will review the measurement again, and if it is the same size, then I need to discuss in real depth on surgery options. My surgeon wants to operate sooner rather than later, and part of me also want this, but at the end, I don't want to rush into something so significant, but on the other hand, I do still have an element of risk if I don't do anything....

I wish I could make a decision program...

47/48mm - Opt 1. Surgery or Opt 2 Wait and See
Opt 1. Surgery - Options A) PEARS, Option B) Valve Sparring

Option A) PEARS.
Risks = New intervention, lots of unknowns, fewer on bicuspid valvers.
Pros = 2 hour surgery, no heart and lung machine, possible quicker recover, possible no anticoagulation.
Overall Risk = <1% Morality OR Morbidity

Option B) Valve Sparring.
Risks
Pros
Overall Risk =

Option 2 - Wait and see
Risks
Pros
Overall Risk =

Decision =

Pfffffff!!!!!! This condition is a nightmare!!!! But I am grateful that I know about it...

@Protimenow agreed, I understand your point entirely. I will also need to check this out, as I do need the 'A' team to perform this surgery.

@all thank you so much for your responses on whether to have surgery during winter/summer time... It seems that either spring or autumn are the best times to have surgery, and also depends on having the right team available, not on holidays.

 

[pellicle]

Hi

@pellicle - good to hear from you and thank you for your post! Love it, Maltesers!!

glad you liked my little photoshop work Mr Malteser ;-)

You live in one of the most beautiful countries in the world.

I say the same when I'm in Finland too ... or when in many places. There is beauty all around the world (although I don't feel that so much about cities)

..., but on the other hand, I do still have an element of risk if I don't do anything....

there is always risk with everything (even risk of choking on a malteser ;-)

I wish I could make a decision program...

no, you don't want a computer to make a decision for you. If the decision seems hard then it is because all options are good. Thus the decision is about what you wish for outcomes not about attempting to pick a lottery.

47/48mm - Opt 1. Surgery or Opt 2 Wait and See
Opt 1. Surgery - Options A) PEARS, Option B) Valve Sparring

at 47/48 I do not see any urgency is decision ... or is it that past that point you reach the cut off for PEARS

Let me use this one as an examination of what I meant above:

Option A) PEARS.
Risks = New intervention, lots of unknowns, fewer on bicuspid valvers.
Pros = 2 hour surgery, no heart and lung machine, possible quicker recover, possible no anticoagulation.
Overall Risk = <1% Morality OR Morbidity

I assume fewer on bicuspid means there is less experience. Refresh me on if you have had the valve replaced (your bio suggests otherwise)? And if I may, please refresh me on your age.

 

[Protimenow]

Hey, Malteser:

"
47/48mm - Opt 1. Surgery or Opt 2 Wait and See
Opt 1. Surgery - Options A) PEARS, Option B) Valve Sparring "

This concerns me. If my valves are sparring with themselves, this can't be good.

And

"
Option A) PEARS.
Risks = New intervention, lots of unknowns, fewer on bicuspid valvers.
Pros = 2 hour surgery, no heart and lung machine, possible quicker recover, possible no anticoagulation.
Overall Risk = <1% Morality OR Morbidity "

If this gives you <1% Morality, you may lose some friends, and gain a lot of new ones.

(Yeah, I'm a pain in the butt stickler for verbal stuff -- these were low hanging fruit. I really DID know what you meant).

 

[themalteser]

@Protimenow lol or (Laugh our loud)!! Oh no!! I have written such bad English! Sparring!! I also had to look twice about 'Morality'. You made me laugh; good one! I will pay much more attention from now on.

@pellicle Thank you for your feedback. Finland is also a beautiful country, and as you said, you can find beauty anywhere. I live in the Netherlands now, and its also a nice country.

My wish is to prevent a multitude of surgeries, and to try new things, for example, Scuba diving (When I visit Malta). I am now 36 years old, and I never had heart surgery before. I have a bicuspid aortic valve that slightly leaks.

At 47mm, as you mentioned, there is no urgency even with PEARS. However, the surgeon told me that as the probability is that at some point the size will grow, it is better to have it done now, while the aorta is still below the threshold. If it goes above the threshold, then probably they will recommend the valve-sparing (@Protimenow SP check ?. However, I read from the testimonials shown in the official PEARS website, that there were patients at 5.2cm as well. Mostly with Marfan syndrome, so as you rightly said, fewer bicuspids will mean less experience; The surgeon reassured me that if needed, it will be easy to remove the PEARS to repair or replace the valve. Having PEARS will not hinder any further treatment.

The only research paper has been written by professor Tom Treasure in 2014 https://heart.bmj.com/content/100/12/969 therefore, there is lack of research and comparison between PEARS and the traditional Valve-Sparing procedure. But the results so far seems promising.

My last scan was a year ago, so my aorta may have already changed in size.

 

[nobog]

PEARS info here

A very good explanation in lay mans terms