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On the operation waiting list!

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On the operation waiting list!

Post by mealinacup1 on Tue Sep 23, 2014 3:16 pm

Hi everyone,
Sorry for not keeping in touch, delighted to be back on the internet, my Mother’s house is on the far edge of town and she has no internet and my phone just about worked, dreadful signal.
I arrived back in London this Sunday after spending two weeks visiting my mum in Hospital, she is recovering well.
I had my appointment this am at 11 to see FP, half my test results were in CT scan, blood test, bone scan, apparently my calcium level were in his level very high 3.2 and parathyroid hormone level 17, I don’t think it’s ever been this high and he said I needed to have this operation.
I asked him to write this down for me and he said don’t worry it will all be in the letter that is sent out.  FP then informed me that these tests confirmed an abnormality not in the neck but in the upper chest and that he was hoping to take out the adenoma via a neck incision and not crack the sternum. Well I was so shocked I did not expect this I still have to do a 24 urine catch, Ultrasound on my kidneys and Parathyroid glands!
So my name is on the waiting list and I was so stunned I forgot to hand my form into the reception desk, so I rang them up on my home and I can take it in this Friday!
I am sitting here with a glass of Chardonnay still thinking “Wow”
Take care  
Much love 
Diana x

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Re: On the operation waiting list!

Post by Lucycatnaps on Tue Sep 23, 2014 3:26 pm

Hi Diana,
It is lovely to hear from you and that your Mum is doing a lot better.  I know how worrying it can be when they are getting older and more frail.  I am so glad that you appointment went really well and that finally you will be getting surgery and the help you desperately need.  It sounds like you must have a very large adenoma in their and I think you are the most capable hands possible to get it out.  Do you have any idea how long the wait will be??
Really pleased you had good news
Hugs Sue
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Re: On the operation waiting list!

Post by Admin on Tue Sep 23, 2014 3:26 pm

Good news Diana cheers hope you don't have to wait to long.

Nelly
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Re: On the operation waiting list!

Post by Tigerlily on Tue Sep 23, 2014 5:31 pm

Such good news, Diana - both about your Mum and your consult with FP.

Yes, he sends a very comprehensive letter back to the GP, so I'm sure it will all be in there.

So glad you are in FP's safe hands with all of this, Diana, and that he told you you really need this operation. I am sure he will organise it so that you don't have to wait too long.

You deserve the Chardonnay - Cheers m'Dear!

Love from Tigerlily xxxx

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Re: On the operation waiting list!

Post by Brigitte0 on Tue Sep 23, 2014 10:46 pm

Brilliant news Diana! I'm so glad your Mum is recovering now too; that must be such a relief. I would think you wouldn't have to wait long before your op so that you can get it over and done with. There'll be a new you before you know it sunny flower  

Take care: love and hugs

Brigitte xxxx
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Re: On the operation waiting list!

Post by Little Audrey on Wed Sep 24, 2014 1:17 am

Wonderful news, Diana! So glad your mother is recovering, and you are on your way to surgery!! YAY!!! It is always so nice to hear good news!

Audrey

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Re: On the operation waiting list!

Post by mealinacup1 on Wed Sep 24, 2014 10:52 am

Hi everyone,
Thank you for your kind comments and good wishes. I am on the waiting list, which is I think is 14-16 weeks. I said I would take any cancellation available, I am just grateful that FP managed to locate the offending Parathyroid adenoma.
I just have to do the 24 hour urine catch and ultrasound scans on my Parathyroid glands and kidneys both on Friday then all tests are finished.
Now it’s just a waiting game, as it is for everyone with this awful disease.
Good luck to everyone else waiting for an operation date and those who haven’t been diagnosed yet, keep on fighting, because it does become a fight especially getting Doctors and Endocrinologists to believe you are ill in the first place.
Good luck all
Take care

Diana x

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Re: On the operation waiting list!

Post by Tigerlily on Wed Sep 24, 2014 11:14 am

Can you keep us posted, Diana, on your further tests/scans/etc?
I assume FP located the adenoma via the CT scan?

Sorry - lots of questions from those of us following behind you!
Don't disappear from the forum, though, whilst waiting, or we won't know when you have your op, and we all like to send our best cats cat cat and cyber-hugs!

So glad it's all happening for you, Diana.

Love from Tigerlily xxxx

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Re: On the operation waiting list!

Post by mealinacup1 on Wed Sep 24, 2014 11:36 am

Hi Tigerlily,

I will keep in contact about tests, the operation and my recovery process, i am only to pleased to help others via my experience, that's what this forum is all about informing and helping each other.

FP said on the basis of the first 3 tests, blood work, CT scan and the bone scan, confirmed it for him and he seemed very confident, so it was the CT scan that clinched it i think and the Parathyroid Venous Sample done at my local hospital.

The rest of the tests are i assume scans to check that there is no calcification of the kidneys and check the other Parathyroids.

Much love
Diana x

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Re: On the operation waiting list!

Post by Tigerlily on Wed Sep 24, 2014 2:34 pm

Thanks, Diana - forgot you had a venous sampling done locally.

Best of luck with the other tests. So glad you have FP looking after you.

Love from Tigerlily xxxx

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Re: On the operation waiting list!

Post by NancyMi on Wed Sep 24, 2014 2:42 pm

Wow Diana, 
     This was a lot to take in but like many have mentioned, you will be in good hands. 

What were your bone mineral density test results like?  Just wondering since your numbers are quite up.  Have you also had fatigue, muscle pain and some anxiety?   I found the anxiety to be terrible when my PT%H level was up to 144. 

    So good to hear everything is lined up.   Will you avoid vit D and calcium while you are waiting?

Nancy

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Re: On the operation waiting list!

Post by mealinacup1 on Wed Sep 24, 2014 3:18 pm

Hi Nancy,

Yes i do have had fatique, muscle pain and anxiety. I have in the last few months had headaches and nausea.

FP didn't mention my bone density test results, he went straight into confirming the operation, when i asked for him to write these down, he replied, don't worry he will send a letter to my GP with the results and i will get a copy.
To be honest i was stunned that he had found it in such a difficult location, and his said the next time i would see him would be at the operation!!!
Yes i will avoid calcium, but i will take a low dose of vitamin D.

Take Care

Diana x

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Re: On the operation waiting list!

Post by MaryM on Thu Sep 25, 2014 11:34 am

Hi Diana

Wow your reading are high, mine only ever went as high as Calcium 2.9 and PTH 15 and they were really concerned when they were are this level.

I am glad that you are on the waiting list and that you don't have to wait too long.

Good news about your mum.

Mary x

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Re: On the operation waiting list!

Post by mealinacup1 on Thu Sep 25, 2014 2:37 pm

Hi Mary,

How nice to hear from you.
How is your recovery process going?
Yes i agree my numbers are high and i am hoping that FP will take this under consideration, but like everyone else i am on the waiting list, which is a massive step up for me, at least i know i am getting some where.

Take care Mary

Diana x

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Re: On the operation waiting list!

Post by MaryM on Thu Sep 25, 2014 2:59 pm

Hi Diana

Everything is going well.
I am really starting to feel the benefit now after having the OP.

Gone are the headaches, heartburn and the constant thirst but best of all I am sleeping a lot better.
Also I feel more like my old self again which is amazing.

I have other health issues so I am always sore somewhere and I do still suffer a bit with fatigue but it does not seem as bad but that is probably because I am getting a good nights sleep.

I am really glad things are progressing for you.

Mary x

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Re: On the operation waiting list!

Post by Jasmine2 on Thu Sep 25, 2014 3:48 pm

That is good news Mary, so pleased to hear you're starting to feel so much better, gives us all a boost to hear that.

Jasmine x
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Re: On the operation waiting list!

Post by mealinacup1 on Thu Sep 25, 2014 6:44 pm

Thank you Mary,

Yes it must be great getting those extra hours sleep and not waking up to quench a thirst.
I'm glad you are getting back to your old self, with Parathyroid disease you feel like an endless list of symptoms that completely drain and exhaust you.

So happy for you!
Take care
Diana x

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Re: On the operation waiting list!

Post by Tigerlily on Thu Sep 25, 2014 7:27 pm

Yes, happy to hear of your post-op improvements, Mary - especially a good night's sleep!
Makes us think there is hope!

Love from Tigerlily xxxx

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Re: On the operation waiting list!

Post by mealinacup1 on Fri Sep 26, 2014 9:34 am

Hi, just handed in my 24 hour urine specimen, decided to take a taxi
Instead.
Now waiting for ultrasound scans on my kidneys and Parathyroid both.
Now all have to do is wait for my operation date, as all tests are in!!

Diana

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Re: On the operation waiting list!

Post by Brigitte0 on Fri Sep 26, 2014 9:44 am

Hope you don't have to hang around waiting for too long Diana. I'm glad you're moving forward rapidly. Soon this will all be a nasty nightmare! 

Love and hugs 

Brigitte xxx
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