On the road to a sleeved life.

[Besel]

Quick update.

GP has agreed to refer and I am going the NHS route after all. Money would be too tight to do it privately and if I'm honest, I think I can do with the many months of prep to get my head together. Have been offered a choice of Guy's and St Thomas' or King's College Hospital.

It looks like you do the first part and all the prepping at your chosen hospital and then the actual surgery is at KCH.

Will browse the threads, but if anybody has any recommendation for either one of those teams, please do share.

 

[Besel]

Waw, it's been more than a year and a half since my last post.

So, I got referred to the local bariatric clinic.
Attended the intake interview, the seminar and saw the dietician once...and was told that since I have been doing so great(!) in making lifestyle changes, they weren't sure surgery was right for me. Even though they had my whole background and history.
And foolishly, I believed them and went with it.
They said they wouldn't discharge me straight away, but review.
I haven't heard from them in more than 6 months now. To be honest, I was wishing and hoping that I really could do this on my own. So I didn't chase them
But the weight has not shifted much at all. I signed up for a local 12 week peer support weight loss program and lost 2kg. Not nearly enough to get rid of the disappointment and feeling of failure and shame, yet again.

In that year and and half since my last post, I managed to loose a measly 5kg. My joint pains are getting worse, my energy levels and mood are dwindling.
And every single day food still has a hold over me in one way or another. It feels like a never ending battle.

I'm picking up the phone tomorrow and getting myself back on the pathway.
Hopefully I can pick up where we left off and I don't need a new referral; loosing those 5kg means I have dropped under the BMI40 cut off...

 

[Besel]

Looks like no new referral is needed.
I'm waiting for a date when my case will be discussed at the MDT.

In the mean time, I'm on round 2 of researching and found this website

http://nbsr.e-dendrite.com

Very helpful to look up specific surgeons.

 

[TiaLi]

I had my surgery at King's (is that still where you're going?) and can really recommend Professor Ameet Patel. He is not only a fantastic surgeon, but also such a lovely person who genuinely cares about his patients. I've also heard really good things about Avril Chang who is also at King's, but don't have any direct experience of her.

 

[Besel]

@TiaLi

Yes, if all goes well, I should be going to KCH for the actual surgery.
Looks like Prof Patel might be doing less surgeries these days and Chang is doing most of them.

All the pre-op stuff is still done at GSTT.

 

[TiaLi]

King's do pre-op as well, but if you were referred to GSTT they will handle it there before handing you over to King's. I didn't know he was cutting back on surgeries? Mine was only 4 months ago. Glad I got it done before he did cut back in that case, he was really great. There's another bariatric surgeon in addition to Chang as well, but I can't remember his name.

 

[Besel]

MDT date confirmed for mid August.

 

[Besel]

Next stop:
Sleep apnoe test and appointment with surgeon.
No date for either of those yet.
Slow but steady .

 

[Besel]

Hi all,

I don’t post much, but do follow other people’s journeys and find all of your stories and contributions very motivating and inspiring.

As so many people ask about waiting times I thought it would be helpful to post updates on my appointment dates.

So a few weeks ago I had my sleep apnoe test. No results yet.

Last week I saw the bariatric nurse (and not the surgeon as it said in the letter).
Outcome of that visit was that bloodwork needs to be done and a gastroscopy.
Follow up appointment to discuss the outcome of those tests will be in February and then I can go on the actual surgery waiting list, which will be about another year.

Patience is a virtue!

 

[Maria61]

Hi all,

I don’t post much, but do follow other people’s journeys and find all of your stories and contributions very motivating and inspiring.

As so many people ask about waiting times I thought it would be helpful to post updates on my appointment dates.

So a few weeks ago I had my sleep apnoe test. No results yet.

Last week I saw the bariatric nurse (and not the surgeon as it said in the letter).
Outcome of that visit was that bloodwork needs to be done and a gastroscopy.
Follow up appointment to discuss the outcome of those tests will be in February and then I can go on the actual surgery waiting list, which will be about another year.

Patience is a virtue!

It will be worth it. Good luck to you x

 

[Besel]

Gastroscopy done.

But with some not expected side effects.
2 of the nurses (who were very lovely) had a very clear opinion on me being on the bariatric pathway.
‘You’re not that big that you need surgery, surely,...’ and they went on to kindly explain why I don’t need surgery.
That almost upset me more that the gagging, dry heaving and violent burping during the procedure.

So far, everybody I have told about my plans and the pathway I am on, have told me ‘you are crazy’, ‘surely you don’t need this’, ‘you are not *that* big’, ‘why would you put yourself through that’.
(I have lost 15kg on my own in the last 2 years but still have 30kg to go if I want to be in the healthy bracket.)

To be honest, those are the things that go through my head as well...I must be crazy to want this.
I am petrified of techical complications during surgery, but I see no other option.

I know only I can make the final decision, but it would be very nice to be able to have an honest discussion with somebody who has all the facts and can be more objective than the strangers and professionals, my family and friends.

I am starting to wonder whether they are right...but what is the alternative?
I’m having more good than bad food days nowadays, but it still a massive battle, mostly in my head, to make healthy choices and stay motivated...

When you guys have had conversations with your surgeons before the surgery, was that helpful? Or was there somebody else in the bariatric MDT that was helpful?
So far, everybody I have met was very pressed for time and focussed on filling out the forms for the next steps and there hasn’t been the time (or interest) for a conversation...

 

[Besel]

So... 2,5 years after my referral, I am on the official surgery waiting list.
Was told 8 months from now.
Patience is a bloody virtue!

The conversation (with somebody from the surgical team - not the surgeon himself) was very technical.
Nothing I didn’t know already, but was surprised to see how big an impact they say the removal of the hunger hormone has. And they said it changes your metabolism.

Over the past few years I’ve gone from 100% convinced this is the right thing to do, to complete doubts and ‘shoudln’t I just try a little bit harder and longer’.

Thank you all for sharing your stories.
It’s been a massive help and I’m sure it will be in the next 8 months of my journey.

Has anybody had the surgery without seeing the actual surgeon?

 

[slimkim]

Think about the reasons why you want the surgery and write them somewhere. If you can convince yourself that those reasons are not important then don't do it. If looking at them you can't see any other way around it then stick with it. You have lots of patience, 2.5 years waiting around. My London GP basically told me I wouldn't even get on the list and my BMI is in the mid 40s. I hope it works out for you. At least you've maintained your weight loss for a long while so you must be doing something right.

 

[Besel]

Think about the reasons why you want the surgery and write them somewhere. If you can convince yourself that those reasons are not important then don't do it. If looking at them you can't see any other way around it then stick with it. You have lots of patience, 2.5 years waiting around. My London GP basically told me I wouldn't even get on the list and my BMI is in the mid 40s. I hope it works out for you. At least you've maintained your weight loss for a long while so you must be doing something right.

O waw. That is interesting to hear that you’ve been told you wouldn’t even get on the waiting list with your stats, @slimkim.
The NICE guidelines are pretty clear!

I found that most (if not all) medical professionals (apart from the ones on the MDT) don’t know enough about this area and if even they think they do, they’ve made it pretty clear to me they don’t agree.
There’s so much bias out there. Like we don’t have enough battles to fight .

I had consultations with a few Belgian surgeons as well a few years ago, and although I would much rather go with one of them because of their track record, I just can’t afford it.
So I came back to the NHS.
I’m following your journey and hope all goes well!

I’m going to make an appointment (or a few) with my ‘food guy’ (i.e. therapist) closer to the opp date to talk things through one last time (armed with my pro and con list!)

 

[Besel]

Next step:
Nutritional info group session at St Thomas’ in a few weeks.

Has anybody done that one at Tommies? What will be covered?
I’ve done a group session like that already a year and a half ago so wondering what this one will be about.

 

[Besel]

I received my official "you're on the waiting list" letter from KCH.

Truly on the road to a sleeved life now.

Counting down to October 2018. Although I have a feeling it might be more like December 2018 - January 2019 going on other people's timescales at KCH.

That would be 3.5 years after the referral!

And between now and then I'll probably think 100 more times I can do this on my own. And yet the scales will hardly move. Or keep yoyo-ing.
But my hiatal hernia is becoming more of a problem every day so the mental scales are starting to seriously tip towards 'surgery without a shadow of a doubt'.

How do others with such a long journey keep a level head?

 

[Besel]

Oh and I found out who I actually had the appointment with.

One of the general surgeons.

Do you normally meet beforehand with the actual man or woman that will be wielding the scalpel or could it be that you don’t see the surgeon till much closer to the actual op or even only after the op?

 

[Laaux]

Oh and I found out who I actually had the appointment with.

One of the general surgeons.

Do you normally meet beforehand with the actual man or woman that will be wielding the scalpel or could it be that you don’t see the surgeon till much closer to the actual op or even only after the op?

I met my surgeon at the beginning of my journey and saw him again when surgery was agreed. I then saw him before my operation and the day after my op x

 

[slimkim]

But my hiatal hernia is becoming more of a problem every day so the mental scales are starting to seriously tip towards 'surgery without a shadow of a doubt'.

Congratulations on getting a date to meet your surgeon. Do you know if they will fix the hernia when they operate? My surgeon said that if he saw one when operating that it could have changed my surgery from sleeve to bypass. He also mentioned that is the hernia was really enormous that I might not get the bariatric surgery at all and just the hernia fixed.

 

[Besel]

The surgeon said they would go ahead with the surgery, no matter what and that they could do the repair right there and then or let me heal first and repair later.
He didn’t mention switching to a bypass.
Maybe it depends on the type of hernia? IDK.
Mine is a 6cm sliding one, which they seem to think is not that big of a deal.