Having anxiety, my first PV replacement...at age 30

[lifesaverDO]

Good afternoon everyone

I hope you are doing well. This is my first post and very happy to find this website.

A bit about me, I am a 30 year medical school student with aspirations to become a Cardiologist one day.

I had TOF and went with a full repair at the age of 10 months old. I also had a number of catherizations through out my life including a stent placement.

That said, very recently they tried to implant a Edward Sapien Pulmonary Valve but couldnt due to sizing differences. It appears now I have to go through Open Heart Surgery.

I am a medical student and I know the advances in medicine are amazing., but the thought of a second open heart surgery after 30 years scare the crap out of me especially considering my heart will be stopped.

What are everyone's thoughts on getting something like this done in terms morbidity and mortality? The risk of "on the table" catastrophic complications.

Just FYI I will be having it done at Cincinnati Childrens Hospital under the care of Dr. Learn, Dr. Goldstein and Dr. Morales (Surgeon)

https://www.cincinnatichildrens.org/bio/m/david-morales

Thanks in advance.

 

[scott.eitman]

Welcome aboard. Heck yes, this is scary.

I recommend making sure you do your research. You want a Dr that is familiar with both TOF and has a lot of experience with second surgeries. I do not fully understand the process, but there is likely to be a lot of internal scare tissue that will need to be cut through. Not every surgeon will have this experience.

Mended Little Hearts (http://mendedlittlehearts.org/) probably has member with experience with TOF and second surgeries.

 

[pellicle]

Hi

and welcome

What are everyone's thoughts on getting something like this done in terms morbidity and mortality? The risk of "on the table" catastrophic complications.

the data is easily obtainable and if you're a med student I'm surprised you don't have ready access to a library that would assist you with that research. There are literally millions done every year around the world and the data is quite good in terms of 30 day morbidity.

Redo surgery is risky for a whole host of reasons, but having your heart stopped is not the prime one. Infections, damage to nerves due to scar tissue, bone scar tissue build up ... all manner of things. Still redo surgery is now far less risky than it was. I've had a total of 3 OHS in my life.

I would however agree entirely that minimising surgery is a sound idea. At your age a tissue valve will degenerate and calcify quickly and you may not get even 10 years from it. Of course a mechanical valve will require you to be on AC therapy. To me that's not a big issue, but you'll want to manage it yourself because most AC clinics are not obtaining great results and full self administration (especially for you) would be the obvious way.

I have a blog post which will give you a good introduction to that:
http://cjeastwd.blogspot.ocm/2014/09/managing-my-inr.html

Do some research on valve types and here is a starter link with some data and ideas for further research reading:
http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html

Best Wishes

 

[lifesaverDO]

Hi

and welcome



the data is easily obtainable and if you're a med student I'm surprised you don't have ready access to a library that would assist you with that research. There are literally millions done every year around the world and the data is quite good in terms of 30 day morbidity.

Redo surgery is risky for a whole host of reasons, but having your heart stopped is not the prime one. Infections, damage to nerves due to scar tissue, bone scar tissue build up ... all manner of things. Still redo surgery is now far less risky than it was. I've had a total of 3 OHS in my life.

I would however agree entirely that minimising surgery is a sound idea. At your age a tissue valve will degenerate and calcify quickly and you may not get even 10 years from it. Of course a mechanical valve will require you to be on AC therapy. To me that's not a big issue, but you'll want to manage it yourself because most AC clinics are not obtaining great results and full self administration (especially for you) would be the obvious way.

I have a blog post which will give you a good introduction to that:
http://cjeastwd.blogspot.ocm/2014/09/managing-my-inr.html

Do some research on valve types and here is a starter link with some data and ideas for further research reading:
http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html

Best Wishes

Thanks for your well wishes. Well my particular surgeon operates out of Adult Congenital Heart Clinic. In fact, his title states "congenital heart surgeon". He was recently in the news in working on a 22 hour case. I mean I feel hes done many of these types of cases.

You are indeed correct that I do have access to the literature, but talking to fellow patients like yourself is what I need I feel. Stats are good for publishing but exerperiences to me mean more.

 

[dick0236]

Welcome. I also had Open Heart Surgery as a young man (31) and believed my life expectancy would be shortened by a decade or two. Didn't happen. Do your research, make your decision and go on with your live. As a "doc in training" don't lose sight of the forest for the trees......this is a fixable problem.

 

[lifesaverDO]

For those curious,

this will be my surgeon.....

https://www.cincinnatichildrens.org/bio/m/david-morales

 

[pellicle]

Hi

You are indeed correct that I do have access to the literature, but talking to fellow patients like yourself is what I need I feel. Stats are good for publishing but exerperiences to me mean more.

Ok, I mis understood ... sounded like you were after stats. (when you asked: "What are everyone's thoughts on getting something like this done in terms morbidity and mortality? The risk of "on the table" catastrophic complications".)

As far as patient experience ... where to start?

To me the main thing to focus on is getting better. I had a congenital bicuspid valve and was operated on at 10 (repair), 28 (homograft) and lastly 48 (5 years back) for a mechanical.

You'll find heaps here about how people felt ... you'll do fine. Without a specific question I don't really know what to say (without rambling).

As to surgeons, its a big world outside the USA and I'm not from the USA, so I didn't catch your TV show. There are lots of competent surgeons in the world, many in Europe, UK and even some in Australia (where I'm from). I'm sort of curious why you keep posting links to your Dr ... we have members here from Uk, NZ, India, Scandinavia ... (me from Aus) ... seems a bit ... well lost really.

The surgeons job is done in a day or so, then the ER teams job in a couple more and finally its you on your own. Generally things go pretty well, but there are occasional bumps in the road. I'd suggest you take it one step at a time and don't get ahead of yourself worrying about what bumps may come. You'll get over all of them and in a few years it will be "the past"

Best Wishes

 

[lifesaverDO]

Hi



Ok, I mis understood ... sounded like you were after stats. (when you asked: "What are everyone's thoughts on getting something like this done in terms morbidity and mortality? The risk of "on the table" catastrophic complications".)

As far as patient experience ... where to start?

To me the main thing to focus on is getting better. I had a congenital bicuspid valve and was operated on at 10 (repair), 28 (homograft) and lastly 48 (5 years back) for a mechanical.

You'll find heaps here about how people felt ... you'll do fine. Without a specific question I don't really know what to say (without rambling).

As to surgeons, its a big world outside the USA and I'm not from the USA, so I didn't catch your TV show. There are lots of competent surgeons in the world, many in Europe, UK and even some in Australia (where I'm from). I'm sort of curious why you keep posting links to your Dr ... we have members here from Uk, NZ, India, Scandinavia ... (me from Aus) ... seems a bit ... well lost really.

The surgeons job is done in a day or so, then the ER teams job in a couple more and finally its you on your own. Generally things go pretty well, but there are occasional bumps in the road. I'd suggest you take it one step at a time and don't get ahead of yourself worrying about what bumps may come. You'll get over all of them and in a few years it will be "the past"

Best Wishes

Thank you for your message. I apologize if my post came off as patronizing. That was not my intention. I was trying to see what people felt in terms of that specific person to match up to their own surgeon in terms of that. You are right, there are many many capable surgeons outside the USA.

I think part of me just wants to hear it from fellow patients that it is okay to feel this anxiety and in the end a competent surgeon will get the job done.

THank you again for your contribution. Best wishes.

 

[honeybunny]

Anxiety is perfectly normal when facing OHS. That's one reason this website is so great. My anxiety was lessened tremendously just knowing that the folks here went through the same surgery and survived. Never forget that your issue fixable, unlike a diagnosis of terminal cancer.

I found it helpful to read the post-surgery forum ahead of my surgery to have a better idea of what to expect. At least one person here reported being distressed by reading those posts but I felt better prepared.

Do do you have a support group to see you through your recovery?

 

[pellicle]

Hi

Thank you for your message. I apologize if my post came off as patronizing.

Not at all, I don't think it was patronising, just odd.

 

[Warrick]

"Full Time Medical Student (Future Adult Congenital Heart Specialist)"

Kudos for your goals !! you'll have David's job one day.. Director

 

[Paleowoman]

I think part of me just wants to hear it from fellow patients that it is okay to feel this anxiety and in the end a competent surgeon will get the job done.

Hi - anxiety is perfectly normal in this situation. And the fact that you’'ve had previous procedures doesn’'t necessarily help your anxiety levels - even a procedure at 10 months old will have had an effect on you psychologically to some degree even if you’'re not conscious of it, and the fact that you are a medical student also doesn’'t help as I’'m sure you may see, or hear talk, of patients who don’'t do well. I’'m sure I read of a cardiac surgeon on Adam Pick’'s website who had to have open heart surgery and he was highly anxious about it too. But nearly everyone here will feel anxious in the run up to surgery.

As to surgeons, you want one that’s good at “cutting and sewing” as my doctors put it, and one that has a lot of experience. My surgeon ticked those boxes but was pretty useless when it came to answering my questions about surgery - I had to watch YouTube videos of surgery to get some of my questions about the actual surgery answered ! And I had to ask another cardiac surgeon for more information. I’'m still here, three years after open heart surgery (bicuspid aortic valve) - it’'s not a piece of cake but better than not having it done if you get my meaning.

A very good book I read before I had surgery was ‘Coping with Heart Surgery and Bypassing Depression’ by Carol Cohan. It goes into questions regarding anxiety and so on. And this forum is wonderful too

 

[Mellyouttaphase]

Late to post but just want to shout out and say Hi. I too, am a TOF kid and I had my first PV last year at the age of 31. I perceived myself as asymptomatic and my attitude going into my surgery was one of deep-seated anxiety buried under denial. I think I may have had an easier immediate emotional recovery if I had opened up more prior to the surgery. I did lots of research which in some ways comforted but other ways scared me more so I can't imagine how a medical background changes the game!