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Saw FP at hammersmith today

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Saw FP at hammersmith today

Post by Tigerlily on Wed Aug 13, 2014 8:54 pm

First topic message reminder :

" ....... keep thinking about when we get chucked out of the Ritz for dancing on the tables and being told by 'da management' that we're all old enough to know better.....that's when we clonk him one with our 24 hour urine collection bottles and collect our ASBOs on the way out ....."

Well, I don't know, I only have to be away for a while and look what you lot are planning for The Ritz trip!  That is just so funny, Jasmine!!! cat  cat  cat  cat 


As Diana said, the traffic in London was a bit grim and the sat nav had it's way with us - when we came out of the Blackwall Tunnel on the road to Dover, we realised something was wrong!! But we had left plenty of time for detours and saw FP as planned.

Basically, it turned out to be a token visit (after my first private consult with him) just to get me booked into the Hammersmith's NHS system, but I am now on his list for surgery within 18 weeks! I just have to go down for US and sestamibi localisation imaging in the next trip and then the next after that will be for the op.  I am so relieved after all this time. He wasn't so interested to look at my pituitary problems and suggested that I get those investigated "locally". Luckily I have all that in hand. I would have been interested in his opinion, but maybe that is not his field.

He told me the risks: basically infection and damage to the recurrent laryngeal nerve but the percentages were no higher than 2% in his case, he said, so that was OK with me.

He also said something interesting about symptoms etc., i.e. that there was no guarantee that the op would relieve my symptoms which could also be due to other things, aging, etc., but that the main reason for offering me the operation was that an untreated parathyroid adenoma was a significant risk factor for heart disease. I had read this before and frighteningly enough what I had read (and I will try and find the paper to post on here) said that one's life expectancy could be shortened by approx. 5-10 years (I think) if a PTH adenoma is causing problems and is not removed.

I don't want to frighten anyone with that information, but it's certainly something to bring up when discussing the subject with endos' and GP's who are seemingly not rushing to help you get a diagnosis.

Totally wiped out now by the journey and elation - but back soon.

Sorry so many of you have had such a bad day today - sleep well and tomorrow will be better.

Lots of love from Tigerlily xxxx

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Re: Saw FP at hammersmith today

Post by Amanda Lynne on Sun Aug 17, 2014 7:58 am

Thanks Audrey I'm trying my hardest to get that sparkle back. I love you 
Love Amanda xxxx
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Re: Saw FP at hammersmith today

Post by Tigerlily on Tue Aug 19, 2014 9:17 am

I only saw FP on Wednesday last week and my next appointment came by letter yesterday!
That's just 4 working days including the day I saw him!
The Hammersmith system seems to be working fast. It usually takes 10-14 days up here in Suffolk for an appointment letter to be sent out.

I go to the Hammersmith again for US and mibi scan on 29 October, so hopefully maybe in November it might be "adios adenoma"! (Grateful thanks to Kemosabi Audrey for that one!)

Have a good week, Everyone. Does anyone have any important events/appointments coming up?

Love from Tigerlily xxxx

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Re: Saw FP at hammersmith today

Post by Jasmine2 on Tue Aug 19, 2014 9:29 am

This is getting seriously exciting now Tigerlily! How sad it is that we - as in our little band of pHPT warriors - get excited at the prospect of putting ourselves through surgery though just to get another chance at some quality of life! I personally would jump through flaming hoops to get another re-do even though it may be risky! Could be your best Christmas present ever Tigerlily, then New Year, New You .....

Jasmine x

PS if and when I get news of something important I'll be shouting it from the rooftops if it's good .....!
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Re: Saw FP at hammersmith today

Post by Tigerlily on Tue Aug 19, 2014 9:36 am

Cheers, Jasmine - nice to hear from you - your CaSR results should be back this week, shouldn't they?
I do hope so. And then you can get planning again yourself for the next stage of the j... (that word again!) journey.

Yes, New Me in 2015 - hadn't thought of that! If I were normal, I could be dangerous!

Love Tigerlily xxxx

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Re: Saw FP at hammersmith today

Post by Meggy on Tue Aug 19, 2014 10:28 am

Normal is seriously over rated, normal *health* would be good but personality wise don't think some of us will ever get there and that's a bloody good thing too:-)

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Re: Saw FP at hammersmith today

Post by Tigerlily on Tue Aug 19, 2014 10:46 am

Quite right, Meggy - The Ritz won't know what's hit it when we finally get there!!

Love from Tigerlily xxxx

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Re: Saw FP at hammersmith today

Post by Amanda Lynne on Tue Aug 19, 2014 12:15 pm

Fantastic news Tigerlily, wow old FP doesn't hang about does he. You must be so happy to be just around the corner to better health I'm delighted for you. I love you 
I'm with Jasmine I would be just sooooooo happy to be told that it's another adenoma and surgery would sort me out Very Happy  Very Happy 
I have a feeling I'm going to be the last one to turn up at The Ritz, don't quaff all the Champers before I get there drunken 
Lots of hugs Amanda xxxx
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Re: Saw FP at hammersmith today

Post by Tigerlily on Tue Aug 19, 2014 1:00 pm

We'll keep your seat warm for you, Amanda - and if the bubbly runs out we'll have to start on the potato juice!
Love and Hugs from Tigerlily xxxx

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Re: Saw FP at hammersmith today

Post by Amanda Lynne on Tue Aug 19, 2014 1:15 pm

If the bubbly runs out I'll smuggle some in, in a 24 hr urine container !!! affraid  drunken 
Amanda xxxx
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Re: Saw FP at hammersmith today

Post by Brigitte0 on Tue Aug 19, 2014 1:20 pm

Good news Tigerlily, you'll be dancing on tables in the New Year! I'm so pleased that you've got some appointments to count down to. It's so encouraging to have something to aim for rather than to wonder and wait all the time. 

Meggy, I know that I'll never be normal  Wink Must be a bit boring anyway! Normal health would be nice though. 

Please Amanda, no bubbly in a 24 hour urine container due to the chemicals. We don't want any other weird diseases! 

Love and hugs 
Brigitte xxxx
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Re: Saw FP at hammersmith today

Post by Amanda Lynne on Tue Aug 19, 2014 1:27 pm

Sorry Brigitte, I'll just have to smuggle a magnum of Bolly up my posh frock & hope no one notices  Smile 
Amanda xxxx
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Re: Saw FP at hammersmith today

Post by Little Audrey on Tue Aug 19, 2014 1:46 pm

What a GREAT conversation here!! By they way, I have a spare (unused!) 24-hour urine jug here if we need it or our celebration. I picked up 2 jugs for a previous post-surgery test, because before surgery I always needed 2 jugs for a test. Don't need 2 jugs now post-op, but I wanted to be prepared for that first post-op test, just in case. I'll bring it along with me to the Ritz. I might add that I have quite an arm. Was a darned good baseball player in my younger days. Not sure if the arm still works, but hopefully it will if needed.  Laughing 

Tigerlily, what wonderful news!!! Sounds like things are moving right along for you. It won't be long now!! Maybe you and I can celebrate together. My 1-year surgery anniversary will be on November 14th.

Jasmine and Amanda, I have a very strong feeling it won't be much longer for you now either! I think we are going to have a LOT to celebrate very soon! We have all been struggling together for so darned long. The end just HAS to be nearing! Yes, soon we will raise those glasses of potato juice high and toast to our strength and courage through it all!

Onward soldiers!!

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Re: Saw FP at hammersmith today

Post by Meggy on Wed Aug 20, 2014 3:01 pm

I'm missing something here, if I'm crashing your party I need to know what potato juice is!

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Re: Saw FP at hammersmith today

Post by Amanda Lynne on Wed Aug 20, 2014 3:13 pm

Hi Meggy
Tigerlily has a Polish friend that recommends potato juice for reflux, I don't think any of us has been brave enough to try it yet Very Happy  
Amanda xxxx
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Re: Saw FP at hammersmith today

Post by Meggy on Wed Aug 20, 2014 3:28 pm

I thought you were brewing (distilling?) your own vodka!

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Re: Saw FP at hammersmith today

Post by Little Audrey on Wed Aug 20, 2014 6:40 pm

That's funny, Meggy.   When I told my husband that Tigerlily recommended potato juice for acid reflux.  The first thing he said was, "Isn't that what vodka is made of?"   Hmmm.....Ya know, maybe the vodka would do us more good than the raw potato juice.   We might still have acid reflux, but who would care?!!    lol! 

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Re: Saw FP at hammersmith today

Post by Tigerlily on Thu Aug 21, 2014 10:51 am

Brilliant - y'All!!  The vodka connection - that must be why my Polish friend recommends it!!

Love Tigerlily xxxx

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Re: Saw FP at hammersmith today

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