"To A Battle Well Fought" And What You Can Learn From It

[tg2000]

Had an AVR + root replacement July 1st - in the weeks leading to that I have been silently reading a lot of your stories - they gave me a lot of strength knowing that many others around the world were (and are) facing the same challenges daily. Thank you all 🙏

Here are some stories from this 6-month process I hope you can benefit from

* I was what they call an 'asymptomatic' patient, the only symptom I had is I was rushing to the boarding gate to catch a flight and collapsed point blank on my face. Eventually someone woke me up, I got up and carried on to board the plane lol. It wasn't until I saw the bruises on my face etc the following day that I realized what had happened

* Went to the local doctor who went on to refer me to a Cambridge-educated private cardiologist

* He ordered an MRI scan and bunch of other tests. Results came back and said "Tiz, you're as healthy as you can ever be. All clear"

* A few months later, I happen to be in Latvia (Eastern European country), and happen to have a few days waiting for a deal to close. Turns out its a center of excellence for cardiology and it's very inexpensive, so I decide to get a second opinion

* Dr tells me the previous cardiologist requested the wrong MRI scan (they didn't look at the right things)

* I come back to London, see new cardiologist, new tests are done

LEARNING POINT 1: Always get (at least) a second opinion. "Trust, but verify"

* Just before Xmas 2nd cardiologist breaks the news in no uncertain terms that I will need open heart surgery (and if I choose a biological valve, a series of them). I am 37, and if you consider how the risks double or triple from one surgery to the next - you'll quickly see how this is cutting short my expected lifespan by a good chunk of years point blank

* Anyway, he refers me to surgeon 1 (presumably one of the best in Europe for this). Meet him and to me it looks like he's doing surgeries in a conveyor belt. Presents me with the 2 usual options (bio or mechanical valve), tells me that a full sternotomy (full cutting of the middle chest bone) is the "gold standard". He's all up for 'trying new things' but refuses to explore other options. He kind of says "just get on with it"

* I meet with a 2nd surgeon, professor at one of the leading medical universities here in London. He's somewhat more open to exploring new options, and says that a mini-steronotomy is an option.

What's the difference? In a full steronotomy, the surgeon is cutting all of the middle chest bone (sternum) and wrenching (literally) your chest open. In a "mini"-sternotomy the surgeon cuts only a part of it. This doesn't just make a difference to the scar you get, but perhaps makes even bigger difference to the healing of the bone because the lower 2/3 of the bone remain intact so there's a lot less wiggle room in the healing process (for the bone to heal fast and well, the two sides need to have the least movement possible). So in a "full", the surgeon places a bunch of cables across the whole length of the chest to keep it still, in a "mini" he only needs to place a couple of cables or so to keep the upper part of the sternum still. BIG difference. Last but not least, the smaller the cut, the smaller the chances of you getting a deep sternal wound infection or some other infection. Those are nasty, with ca 20% fatality rate.

LEARNING POINT 2: In this field, they will never give you all the options available. Maybe because it's complex, maybe because they're short on time. Whatever. DO YOUR OWN RESEARCH AND GET TO THE BOTTOM OF IT. Doctors are your expert advisors, the final judgement call rests on you and only you. Be your own patient advocate.

* I meet with a 3rd surgeon who orders an additional test (CT scan). He says that not only the aortic valve needs to be replaced, but also the aortic root. I am confused. 3 top surgeons in the field are coming up with 3 different conclusions looking at the SAME data. This doesn't make sense

* By this point, the complexity of all this is beyond me. I try and get surgeon 2 and 3 of them to speak so they come to a consensus but egos get in the way (yes) so they're not speaking to each other

* In a field where I know little, after a LOT of reading I have no choice but have to make a (guesstimate?) judgement call and the surgery goes ahead July 1st. It is what I this and am comfortable with my choice (AVR + root)

LEARNING POINT 3: Things are hardly black and white. Where there is a way, there is a will. Chances are that there is always a better solution to the first one that is proposed to you. And if there isn't, do your due diligence to make sure there isn't.

It was a long and hard battle, but it was well worth it. I couldn't be any more at peace with myself with the choices made throughout the process.

For all surgeons and medical professionals reading this, love you guys. I can imagine the constraints and pressures some of you are under. The purpose of this post is to help patients play a better and more active role in this process. Thanks for keeping saving lives and making the world a better place

PS: Am still under medication, sleeping most of the day, etc so can spend a very limited amount of time on internet-related activities so thanks in advance for all your comments and feedback which I'll review as I recover 🙏🙏🙏

[ChicagoGirl1961]

Superb advice TG. I would do well to remember when some day I may need to make difficult choices. As a patient, we truly are our best advocate and should not take everything a doctor states as the gospel. I hope your recovery is a speedy one and wish you long life and good fortune.

[Dickydon]

Thanks for sharing your valued experience. And yes, your right, we have the final say and as adults we often are unaware of our own intellect that enables us and US alone to make important choices in life. We must embrace the confidence in trusting and believing in our own ability to make the right choices sometime they're wrong ones, but we alone made them!

[dunestar]

Thanks TG, a very interesting read. I agree with you wholeheartedly that we need to be our own advocate because it's our life and body. This approach is not embraced by all doctors. I fell out with my allocated GP at my GP practice because he felt I was being "too analytical" and trying to be a doctor/nurse. Thankfully I think this unhelpful attitude is actively discouraged at medical schools today. My niece is a junior doctor and she tells me that during her training the emphasis was very much on doctor and patient working together. But I guess there will always be the possibility that egos get in the way.

How far we can go with the "own best advocate" approach depends on whether we have the intellect, the drive and commitment together with the financial resources to get the best outcome. When you are feeling unwell, scared and confused and funds are in short supply it's going to be a bigger challenge. That's why I think it's so important we all support and challenge the NHS to do a better job.

[Milkfairy Heart Star in reply to dunestar]

Wise words well said by everyone.

[v42230]

Hi TG,

I read your post this morning and found it very interesting. Good on you for doing your own research and finding the best solution for your condition. Can I ask you, aside from the Cardiologist in Latvia how did you found all the others? Were they all Cardiologists you identified via research then asked your GP to refer you to them? I'm considering getting a second opinion for my condition too even if I have to travel and go private.

[tg2000 in reply to v42230]

Hi v42230

GP was useful in writing the referral but of limited use in terms of identifying the individual specialists

1st surgeon was referred by the cardiologist. found the cardiologist through the list of approved cardios from the insurance. it so happened that the surgeon was also on the insurance list

2nd surgeon was through internet research. i looked up the centres of excellence in this field (there's only a handful) and then looked up those who were experienced (in this case) with 'minimally invasive' approaches

3rd surgeon was also through internet research (he was running some ads on google believe it or not lol)

had to pay for some of the consultations and exams out of pocked as they exceeded some of the insurance limits but it was money well spent. if you can, 'beg steal and borrow' on this as nothing is more important than your health and this is a field with no established 'best practice'

hope this helps

[tg2000 in reply to v42230]

I didn't end up using it but i think under the NHS you are also entitled to a 2nd opinion

[v42230]

TG, thank you very much for this. It's very helpful. I wish you the best of luck with your recovery.