How do I support my husband?

[Ann-Marie]

Hi. My husband was referred to the NAC on Friday with suspected cardiac amyloidosis and amyloid lesions on his leg. We had been expecting a diagnosis of PAD so this has been a complete bombshell. Can you please tell me what to expect and how best I can support Jamie throughout whatever comes?

[patpinchin]

Hi Ann Marie,

Very sorry indeed to read about your husband's suspected diagnosis. Indeed it is a bombshell for us all.

I hope he will have an early appointment at the NAC. The wait can be agonising. As you will see from many posts on this forum, he will receive the very best advice from the specialist Dr he sees there. The NAC is the National Referral Centre for anyone in the UK suspected of having or already diagnosed with any type of amyloidosis.

In advance of your appointment you will be sent a pack of documentation about what to expect from what will probably be a two day appointment, consisting of diagnostic tests, including the unique SAP scan. If you do not live locally you will be booked for an overnight stay at the Premier Inn in Belsize Park less than 10 minutes walk from The Royal Free hospital, where the NAC is located. There is good sineage in the hospital, so it is easy to find your way to the NAC unit on the third floor. On arrival, you will be warmly welcomed by the friendly caring admin staff and looked after very kindly, courteously and compassionately by every member of the team at all times. Follow this link to read what to expect at your first appointment. https://www.ucl.ac.uk/amyloidosis/pdfs/appointment. You will also receive this by post so no need to print it off.

You will be able to accompany your husband for the discussion with the Dr which concludes your visit. Be sure to take pad and pen with you as you may want to write things down. There is a lot to take in. The disease is very complex but all the Drs are very experienced at explaining everything very calmly,  clearly and patiently. The Dr will give you as much time and information as you need. You can ask as many questions as you like and do not be anxious about doing this. All the NAC Drs are very conscious of how anxious new patients and their loved ones are and talk to you accordingly.  You can be confident that your husband will be in the very best of hands. If he is diagnosed with amyloidosis he will be given a treatment plan if appropriate  by the Dr with a full explanation. Usually treatment is carried out locally under the supervision of the patient's referring Doctor. Your husband's NAC Dr wil write to your husband's referring Dr in a very thorough letter giving the results of all his tests and a treatment plan if recommended.  We are extremely fortunate in the UK that we have such a wonderful leading centre of world excellence for amyloidosis to look after us. The team there really is second to none.

Try to avoid Googling amyloidosis as there is much misinformation available on line, and your husband has not yet been diagnosed. Do not look at it even if he is.  Much of the on-line information is scary and likely to be out of date too as great advances in treatments have been made in the last few years. If you cannot resist looking on line, confine your search to the National Amyloidosis Centre website as that is the only reliable and accurate source. Look for the information for patients' sections such as The Comprehensive Patient Website and other patient areas eg: Patient information leaflets. They are written in patient friendly speak. Very important. In the Patient Information Website section there is a list of the various forms of amyloidosis. There is a specific section on cardiac amyloidosis. Confine your reading to that for the moment to avoid confusion and information overload.
http://www.amyloidosis.org.uk/cardiac-amyloidosis-2/

The best support you can give your husband right now is to reassure him that there are many success stories for amyloidosis sufferers with cardiac involvement. Wrap him in comfort, love and positivity  that there will be the best possible outcome.
I am sure you will come away from your visit feeling more confident and reassured than beforehand.
I hope there will be other forum members posting here soon who will echo my words.

My very best wishes to you and both. 

[Annone Butler]

I can only echo what Pat says. My husband was diagnosed with Cardiac AL Amyloidosis in 2010. He has been cared for brilliantly by the NAC and also by the Haematology team at the Royal Free. I would also stress avoiding reading too much before your appointment. There is lots of old information online which will simply scare you. As Pat says, the moment we got to the NAC we both felt reassured and much more positive. Myeloma UK produces a lot of very good information about Amyloidosis which they will send you if you ring them. And they hold various InfoDays each year. There is one about Amyloidosis this November in London. If you can make the journey they are a mine of good information. You get to hear from, and ask questions of, the experts and meet other patients and hear their stories. Details of all this are on the Myeloma UK website. Best wishes to you both.

[Ann-Marie]

Thankyou Pat for your very kind and informative reply. After hearing from yourself and two other ladies via this forum I feel a little calmer, passing on any positive feedback to Jamie. I have bought a notebook specifically for questions and info that will be taken to all appointments.Still waiting for an appointment but everything that I've heard and read so far tells me that Jamie will be in the best possible hands and for now that is all we can ask for. Best wishes xx

[georgeturner]

I hope Jamie's appointment comes soon. It's an anxious and distressing time waiting for an appointment, but as you have read you will be seen by the best possible experts at the NAC. There are many types of amyloidosis and different treatments dependant on the type, so until you get a diagnosis, it's worrying not knowing what to expect. The NAC website as mentioned by Pat will give you up to date and accurate information on all types of amyloidosis.
Myeloma UK provide information and support for AL amyloidosis which is treated similarly to myeloma. Other types of amyloidosis are treated differently.
https://www.myeloma.org.uk/information/related-conditions/al-amyloidosis/

[nvroberts]

All I can do is echo everything said by others. In my case the amyloidosis has attacked my kidneys, and I am now on dialysis. Cardiac amyloidosis presents a different set of problems and I cannot comment on that, having no experience, but the NAC are indeed wonderful, and I am also well supported by the Haematology and Renal units at our local Derby Royal Hospital.
My wife has been an absolute saint. Apart from the fact that I have to do dialysis 3 times a day, which is not as bad as it sounds, my biggest problem is lack of energy. I cannot do much around the house, and have to be careful not to attempt too much each day or I just get exhausted. For instance, I usually walk the dog, and can manage about a 1-mile walk, but if I have other plans for the day, e.g. a major supermarket shop, a trip to a football match or an evening out (even for something as physically undemanding as an evening playng bridge), then my wife has to do the dog-walking. On top of that, she does most of the housework as even a quick run round with the Hoover would be beyond me, and she does her best with the garden too, and looks after her mother who lives close by and is not in the best of health, and she holds down a part-time job. I am a very lucky man.
But as others have said, do not be too scared by anything you read on the internet, and you can rely on the NAC to be absolutely wonderful. My 6-monthly visits to the Royal Free Hospital actually feel like a nice little 2-day holiday in Hampstead. The Premier Inn staff must be used to having RFH patients staying with them, because they will treat you very well. And I love the chance to eat at Carluccio's, up the hill from the hotel, which is a cut above the usual Italian chain restaurants. We also try to get to the Everyman Cinema if there is anything decent showing. Do not despair, it can all be quite fun!

[David]

Now that's what I call looking on the bright side of life