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91
General Discussions / Re: Gamma-glutamyl transferase
« Last Post by Miriam Vered on March 01, 2022, 07:11:28 pm »
This is Professor Gilmore's answer to your question:


A raised GGT is extremely common in ATTR-CM due to liver congestion and of itself, is not usually of any clinical consequence. If the liver congestion is severe however, then it suggests that the patients should be more aggressively diuresed
92
General Discussions / Re: Feet problems
« Last Post by NIGELJOH on February 28, 2022, 02:48:54 pm »
Hi Richard thanks for the reply .what type of swelling have you had ,and was it during your treatment ?water retention or bone and muscle problems?
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General Discussions / Gamma-glutamyl transferase
« Last Post by SpWells2002 on February 27, 2022, 09:26:19 am »
In a couple of months it will be a year since I was diagnosed with ATTR(wt) amyloidosis and in a couple of weeks I will have my 4th injection in the phase 3 trial of Vutrisiran. Around the same time as I started my amyloidosis journey, I began to experience late onset effects of radiotherapy treatment for a cancer. This lead to a referral to a gastroenterologist and currently inconclusive investigations about diagnosis and treatment options. The latest series of blood tests showed a heightened level GGT. A quick internet reading suggests that cardiovascular disease can cause heightened levels of this enzyme. Are there any specific references to raised GGT levels in the literature on ATTR amyloidosis?   
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General Discussions / Re: Feet problems
« Last Post by Richardpreston on February 26, 2022, 12:00:44 pm »
Peripheral neuropathy and swelling.  If you have this take care of it early!
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General Discussions / Re: Amyloidosis and free prescription
« Last Post by Richardpreston on February 26, 2022, 11:58:25 am »
Hi Jon

I have been living with amyloidosis for 12 years.  I would prefer not to have it but there isn't anything I can do about that!  So we get on with a modified life.  My treatment has been fantastic but a bit frustrating at times.  One of the difficulties is that amyloidosis is still unknown to the majority of people and has cause some difficulties as it still doesn't appear on some call centre checklists.  It also causes medical issues that dont fit standard questionnaires and regulations change.  Conditions notifiable to the DVLA seemed to change at one point and it was unclear whether I needed to tell the DVLA.  Their forms made assumptions that fitted the majority but I couldn't answer the questions they asked - I had been treated in four different hospitals by three different professors and two consultants and they wanted to know what my GP thought.  Al. was resolved in the end and I still have my driving licence.

The reason I have gone through all this is to say that life has changed, it is very frustrating, the NHS is not joined up at times and takes a bit of navigating. 

I have had brilliant service from my GP practice.  In recent years I haven't seen a doctor very often but we have a fantastic practice pharmacist, nurse practitioners and health care assistants.  The have been a great source of advice on how to get the best from the NHS.  I cant walk very far and my condition did not seem to fit the blue badge criteria - until the practice nurse told me how to fill the form in.

With respect to your question have you checked.    https://services.nhsbsa.nhs.uk/check-for-help-paying-nhs-costs/start


If that doesn't help you try talking to your GP practice.


Good luck

Richard
96
General Discussions / Re: Survey
« Last Post by freecurry on February 23, 2022, 03:26:38 pm »
Hi Lesley,
So sorry for the delay in replying; not checked the site for a while due to having two little granddaughters to stay. Grandchildren are a blessing aren't they but they're also very exhausting! Quite understand about the group. I wonder if we could try to arrange a zoom meet up sometime as you suggest, in order to gauge interest and then if people wanted to arrange informal meet-ups in the future they could do so. Presumably we could publicise a zoom meet via this forum?
Best wishes
Sue
(aka Freecurry)

Hi Dave - I'm so very sorry to hear of your loss. I too find it frightening how little knowledge there is of this awful disease amongst medical professionals and I'd be interested to hear your plans for trying to increase awareness.
Best wishes
Sue
(aka Freecurry)
97
General Discussions / Re: Survey
« Last Post by Dave Shannon on February 21, 2022, 07:26:28 pm »
Hi Lesley, that's fantastic. Thanks so much.
I will contact Faye and hope she is interested in what I have to say/think??
Please look after yourself, take care and stay well.
Best wishes
Dave x
98
General Discussions / Re: Survey
« Last Post by Lesley on February 21, 2022, 11:53:59 am »
Hi Dave

I have checked with Faye and she is okay for me to circ her email address to you. This is
faye.sharpley@nhs.net
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99
General Discussions / Re: Survey
« Last Post by Dave Shannon on February 18, 2022, 02:32:51 pm »
Hi Lesley

Thanks for responding. It's great to hear that you have a grandson who will no doubt be keeping you very busy and supplied with plenty of love and hugs whilst you fight this horrible, sneaky illness. Was there a "sent from" email address or was it just a post on the forum?
Thanks in advance
Dave
100
General Discussions / Re: Survey
« Last Post by Lesley on February 18, 2022, 10:23:54 am »
Morning

(Freecurry) - unfortunately the support group I was not able to start off - I still work part time and now have a grandson to look after and I just dont seem to have the time to dedicate to a group. However, I wonder if a zoom type meet up would work? Let me know your thoughts on that one?

Dave, no further contact details of Faye other than those I posted. I am so sorry you lost your wife to Amyloid. Its a very difficult time losing someone so close to you and my heart goes out to you at this very sad and difficult time.  If I can find out anymore details off Faye, I will certainly pass them on to you.

Lesley
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