Author Topic: Bereaved family members  (Read 22957 times)

alisonjayne

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  • Posts: 41
  • Reason for joining: My husband was diagnosed with AL amyloidosis in Oct 14 and died of multiple organ failure two wks later aged 59. Amyloid affected his tongue, digestive and nervous system and heart.
  • Diagnosed: Husband diagnosed Oct 14 after 1 yr of tests for symptoms thought to be hep EU
Bereaved family members
« on: February 12, 2015, 10:11:29 pm »
I have just been accepted onto this valuable forum. My husband would have found huge comfort from sharing his concerns about his amyloid through this forum. David died last October aged 59 and I have hesitated to place a message here because whilst I have lost my husband  there is huge hope for others and I don't want to undermine that hope. David probably started to develop Amy deposits about 5 years ago in his carpel tunnels, deposits in his nerves, oedema and swollen tongue which finally gave us diagnosis last Oct after a biopsy of a tongue ulcer. Sadly it had spread to his heart and he caught pneumonia in hospital. A year of  exhaustion and little sleep along with the amyloid meant he could not fight the infection and become fit enough for treatment. I would like to be able to talk to others who have lost their partner to this condition.  But also if I can help with any discussion about AL amyloidosis or support any carers of loved ones, please contact me. I live in Wales with my two 13 yr old daughters. My very best wishes to all members. Ali.

Miriam Vered

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Re: Bereaved family members
« Reply #1 on: February 13, 2015, 09:49:18 am »
Hi Ali,
Welcome to the forum. Good to have you here.
I look forward to reading your posts.
Miriam
« Last Edit: February 13, 2015, 10:46:50 am by Miriam Vered »

georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Bereaved family members
« Reply #2 on: February 13, 2015, 10:26:41 am »
Hi Ali,

How brave of you to come onto the forum so soon after the sad loss of your husband David at such a young age. Thank you for sharing your story. I'm sure your contributions will be much appreciated.

Best wishes to you and your daughters
Slainte Mhath,
George

Lesley

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  • Posts: 175
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: Bereaved family members
« Reply #3 on: February 13, 2015, 12:44:51 pm »
Hello Alison

Welcome to the forum.
I have Amy, however, I lost my husband a third of a way through my treatment. So our roles are in reversal maybe so I can understand your loss and also your thoughts on Amy.
Thank you for coming on here and allowing us to be part of your path on Amyloid, such a wicked disease and I am sure if they had diagnosed your husband earlier, he may have had a chance.
Much thoughts and hugs to you at this very sad time
Lesley

alisonjayne

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  • Posts: 41
  • Reason for joining: My husband was diagnosed with AL amyloidosis in Oct 14 and died of multiple organ failure two wks later aged 59. Amyloid affected his tongue, digestive and nervous system and heart.
  • Diagnosed: Husband diagnosed Oct 14 after 1 yr of tests for symptoms thought to be hep EU
Re: Bereaved family members
« Reply #4 on: February 18, 2015, 08:36:52 pm »
Hello George and Lesley,
Thanks for your words of welcome. It is incredibly helpful to be part of this online community of folk who understand this illness. David and I struggled with his health -lots of symptoms that were thought to be complications of hepatitis E which he was infected with from some unknown source thought to be pork (which he ate very little of since he wasn't keen on meat). A late diagnosis of underlying amy and his death within 2 wks  was shocking and I was left feeling very bewildered by this disease. I need to understand it and hopefully be of some sort of support to others. My daughters and I hope we can do some fundraising for the NAC. We are starting with  a 7 day walk along the Pembrokeshire Coastal Footpath in august, walking sections we walked as a family lots of times. David was a big walker and was planning long distance walks right up to his hospital admission,  always inspiringly positive.

I would like to bring my girls to an info day to help them understand what their Dad suffered from. Do you know if these happen annually and when?

I am very sorry Lesley about the ordeal you had with PIP. It is unbelievable. You would have thought that a diagnosis would mean such interviews would be entirely unecessary.  My sister in law told me of a person  she knows suffering MS a well known illness who suffered similar ridiculous questions in a PIP interview.  Being able to share  your upset about this event on the forum has to be helpful -this forum is a  great thing in many ways alongside a nice bunch of spring flowers on the dinner table. 

I had better end this post here as I have to watch  comic relief bake off with the girls!  Ali

Miriam Vered

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Re: Bereaved family members
« Reply #5 on: February 18, 2015, 08:49:46 pm »
Hi Ali,
AL amyloidosis Infodays with lectures by the NAC consultants are organised annually by Myeloma UK.
You can watch the lectures from the 2014 Infoday at:
http://www.myeloma.org.uk/events/event/al-amyloidosis-infoday-london/


The next Infoday is scheduled for 20 November 2015, see:
http://www.myeloma.org.uk/events/event/al-amyloidosis-infoday-london-2/




Lesley

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  • Posts: 175
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: Bereaved family members
« Reply #6 on: February 19, 2015, 11:15:37 am »
Hi Alison

My heart goes out to you. How old are your girls? Amyloid is a very cruel disease to have and she takes no prisoners for sure. A lady I had my STC with at exactly the same time, is going through chemo yet again as shortly after her STC her FLC rose.

I hope you and your girls get some understanding and relief of Amy(loid) on this forum.

PIP was awful as it resurrected such a terrible time in my life but also brought into the fray, losing my husband also. I actually couldn't speak or answer her questions at one stage, I found them so distressing.

Lovely to 'meet' just in better circumstances.

Lesley
x

alisonjayne

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  • Posts: 41
  • Reason for joining: My husband was diagnosed with AL amyloidosis in Oct 14 and died of multiple organ failure two wks later aged 59. Amyloid affected his tongue, digestive and nervous system and heart.
  • Diagnosed: Husband diagnosed Oct 14 after 1 yr of tests for symptoms thought to be hep EU
Re: Bereaved family members
« Reply #7 on: February 19, 2015, 11:00:24 pm »
Lesley,
My daughters are 13 and give me focus. I am fortunate to have my parents nearby and my husband has a big and supportive family. I am relieved to hear from various Doctors and Ellie who recently posted on the forum, that AL amy is not hereditary. I wish someone could tell me what causes it to start. David had carpel tunnels surgery in both wrists about 5 years ago and increasing problem with pain in his hands, arms, shoulders and appearance of lumps on his arm. These were removed in June 14 but as far as I know they weren't  subject to biopsy. We were told they were neural fibro as.  Maybe they were or maybe they were amyloid deposits. It affected his nervous system, digestive tract leading to weight loss and swollen tongue and finally his heart. They told me that his low blood pressure led to kidney issues and eventually renal failure. He had significant oedema for 14 months before diagnosis. All very gruelling. He was one of the unlucky patients who was misdiagnosed for too long, and by the time he had his diagnosis he was too ill to start chemo. one thing led to another and he caught pneumonia in hospital and was too weak to fight it. It seems this amyloid is a complex thing. I could see the Doctors were up against it, and struggled to get control over his symptoms. David was very confused for about 3 days which was finally explained by his pneumonia, but I was taken aside and told that the amyloid was in his brain. I didn't agree since he had been perfectly lucid 2 days before and recovered enough to give us a day to talk a little just before he went onto life support. I found that suggestion of brain amyloid very upsetting - rightly or wrongly I assumed that the deposits take rather longer to develop to have such a significant effect.

I can't imagine the awfulness of developing this condition and then suffering the loss of your husband Lesley. When did your husband pass away? I think of your situation and I get up and get on with things.  I hope you have the support of friends and family around you. I so hope you and every other patient gets well again.
love Ali

Lesley

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  • Posts: 175
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: Bereaved family members
« Reply #8 on: February 20, 2015, 06:04:14 pm »
Hi Alison
Thanks for yr reply. Yr daughters are still so very young. I may be terribly wrong and I'm sure Miriam will confirm one way or another but I thought One place Amy couldn't go was your brain? Could u confirm this please Miriam?
Oh Alison I'm hoping pat on the forum will answer some of your questions but I have heard of a few people talking of carpal tunnel and not sure if this is linked.
It's such a complex disease to diagnose because of all the affected organs all shouting out and I guess drs have to rule things out as they go along.

We lost  our sister in law feb 2012. I was diagnosed dec 2012. Started chemo feb 2013 and my husband died April 2013. It's all been so hard to take in. I'm coping less now than when I was going through chemo/Stc. But I've met some very special people but all unfortunately connected to Amy. We do seem to help each other and I've been very grateful for everyone's support and Im sure u will get the same too - lesley x

patpinchin

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  • AL - extensive in skin. mouth + palatal nerves '04
Re: Bereaved family members
« Reply #9 on: February 20, 2015, 06:51:07 pm »
Hi Alison,

Firstly I am very sorry indeed to read your sad story of your loss of David and his late diagnosis which is unfortunately still too common. Thanks to the work of Miriam as Awareness Project Co-ordinator at the NAC, Drs across the UK are becoming better informed. Unfortunately not in time for David.  You are right, Amyloidosis is very complex and poorly understood. AL is caused by an abnormal protein in the bone marrow. You can read more about it in the Fact File in the first addition of the NAC newsletter here: http://www.ucl.ac.uk/amyloidosis/pdfs/nac_newsletter_1
I hope it will help you understand a bit better. All the newsletters are very good and well worth reading.
Amyloid can deposit anywhere in the body except the brain. Alzeihmers disease is caused by an accumulation of amyloid plaques in the brain but they are caused by a different protein from the 30 or so which can cause AL. I have a huge lump of amyloid in my arm which was biopsied and amyloid found but it has not been removed. Nor have the extensive lumps elsewhere in my skin. They cause no pain.  I do however have an unusual form of neuropathy in the mouth which is excruciating, but luckily so far no internal organ involvement. Amyloid is slow to form.  However by the time the multiple lumps appeared I had been diagnosed 3 years earlier by a special free light chain blood test and bone marrow biopsy. In my case my well informed local Haematologist "unofficially" diagnosed amyloidosis from the tea-cup sized deep purple bruises around my eyes.
I am glad you and your daughters have such a supportive family to help you in your loss. My very best wishes to you.
Pat

Miriam Vered

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Re: Bereaved family members
« Reply #10 on: February 21, 2015, 11:37:55 pm »
Yes, I can confirm that systemic amyloidosis does not affect the brain.


Ali, your husband's confusion must have been due to a different cause, for example the pneumonia, as you mention. I'm so sorry to hear of what a terrible time you and your family have been through. All my condolences for the loss of David after such an unpleasant and distressing period of illness.


Pat, amyloid deposits are always present in the brain in Alzheimer’s disease.  But it is not known whether these amyloid deposits actually cause disease, whether they make it worse or even whether they are innocent.  It is therefore wrong at this time to consider Alzheimer's disease as a form of amyloidosis.  For more information on this, see http://www.amyloidosis.org.uk/amyloid-associated-diseases/


patpinchin

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  • AL - extensive in skin. mouth + palatal nerves '04
Re: Bereaved family members
« Reply #11 on: February 22, 2015, 09:36:34 am »
Thanks for the link Miriam. Your explanation there explains things in clear detail. My info came from my Haematologist when he diagnosed AL in 2004. He was speaking very generally. There was never any suggestion that Alzeihmers disease was a form of amyloidosis. I remember him telling me that because I had Amyloidosis it did not indicate that I would have Alzeihmers.
Pat

georgeturner

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  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Bereaved family members
« Reply #12 on: February 22, 2015, 11:51:54 am »
As far as I understand Lesley, there is a link between Amyloidosis and Carpal Tunnel syndrome. However, not everyone with Amyloidosis has Carpal Tunnel syndrome, and not everyone with Carpal Tunnel syndrome has Amyloidosis.

I had my first Carpal Tunnel release operation about 10 years before being diagnosed with Amyloidosis  I asked if everyone who had Carpal Tunnel syndrome could be tested for Amyloidosis, but was told that there were so many people with Carpal Tunnel and the number with Amyloidosis was very small.

If all NHS patient medical records were stored centrally online, it would be fairly simple to link all the early symptoms such as Carpal Tunnel syndrome, breathlessness, dizziness, water retention, etc. and prompt GPs to consider Amyloidosis. This could be applied to other late-diagnosed conditions.
Slainte Mhath,
George

alisonjayne

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  • Posts: 41
  • Reason for joining: My husband was diagnosed with AL amyloidosis in Oct 14 and died of multiple organ failure two wks later aged 59. Amyloid affected his tongue, digestive and nervous system and heart.
  • Diagnosed: Husband diagnosed Oct 14 after 1 yr of tests for symptoms thought to be hep EU
Re: Bereaved family members
« Reply #13 on: February 22, 2015, 11:40:40 pm »
David's state of confusion in his last days was probably mainly due to pneumonia but he was given ferosemide and metolozone erratically to get his water retention under control. The Doctors could not administer it if his blood pressure fell below a certain level. It was often  too low due to cardiac amyloid. One evening they did give him the medication and  it was promptly followed by a drip to rehydrate him  as they told me his organ tissues had become dehydrated but loss of water from his legs and hands had been minimal. I did wonder if that  sudden dehydration led to confusion.  His potassium levels plummeted which I believe didn't help the heart. He had a heart attack which he was resuscitated from. The Royal Free advised the hospital to give him blood albumin to encourage movement of water from his legs and that was very effective. He was on life support by then.
Georges point about central storage of symptoms on a database makes so much sense. It's hard to understand why this deosn't happen. When I think back over the past few years and the various operations and health issues David had, all of them seem to be potentially  linked to amyloid. The tongue swelling in addition to a year of unexplained exhaustion and water retention plus history of carpel tunnel should set alarm bells ringing for a senior consultant. The biopsy of the tongue which led to his diagnosis only came about when we got fed up with pointing it out to the consultant he saw monthly,  and  our  GP requested it due to a large very painful ulcer. That was performed at another hospital and the amyloid diagnosis wasn't passed back to David's consultant or  GP.  When David ended up in hospital when I pushed for him to be admitted (as his tongue got thicker and eating was becoming very tricky) the biopsy results from 7 wks before  suddenly materialised.  So a central database would have been helpful  as the 2 local hospitals didn't appear to   communicate over a shared patient.

Thank you Pat, Lesley and Miriam for putting my mind at rest regarding amyloid in the brain. I  will never forget that meeting with that  ill informed  consultant.He did a lot of damage and I have found it difficult to deal with it. Two days after that, David recovered enough for about 8 hours so we could tell share some words. I will always be very grateful for that time.  I think you live in Poole Pat? David worked professionally in Nature Conservation all his working life, starting his career on Studland. His parents lived in Poole so we have lots of happy memories there.
Sorry this is rather a long post but writing amongst folk who understand this condition is incredibly helpful. I only hope I can offer some help or support in  increasing awareness of amyloidosis in some small way.  Alix

patpinchin

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  • AL - extensive in skin. mouth + palatal nerves '04
Re: Bereaved family members
« Reply #14 on: February 28, 2015, 07:13:29 pm »
Hi Alison,

Yours is one of the saddest and most unfortunate stories I have ever read. How unlucky David was with his Consultant and very late diagnosis. I have found during my 13 years with this illness that Consultants (with the exception of Dr Wechalekar at the NAC ) often do not read each others' letters!  In David's case there seem to be signs going back several years that were potentially symptomatic of amyloidosis. These clearly merited further investigation but crucial information seems to have either been missed or overlooked. I know how overloaded Consultants are with the unmanageable size of their caseloads. Unsatisfactory for them and patients. Consequently, for quite a while now I have been taking my most recent Consultants' letters (I insist on copies being sent to me) to my various consultations. My husband invites the Consultant to read the letter(s) before the discussion begins so that he can update himself.  They do not like being asked to do this but we have found it essential even tho' all letters are in my hospital notes always available to each Consultant but which have usually not been read.

A new Oral Consultant I saw recently and who has had experience in London of treating a patient with amyloid in the mouth said he would email Dr Wechalekar to say that he had seen me. He added that he would do this in addition to writing the official letter from the consultation.  He told me that while treating his previous amyloidosis patient he had been in contact with Dr Wechalekar and wanted him to know I was now under his care. He said "how important it is that Drs looking after the same patient talk to each other". Hurrah! We have been saying that for years! Obvious, one would think but mostly, in my experience, they do not!

So full marks for my new Oral Consultant, firstly for his experience of treating a patient with amyloid in the mouth (rare indeed), secondly for making a personal commitment to contact Dr Wechalekar and thirdly for emphasising the importance of communication betwen Doctors treating the same patient. This consultation was so refreshing. I have seen 10 Oral Consultants over the years but my new one is the first to have understood my condition and the intensity of my suffering. To use a modern phrase, he knew where I was coming from. My recent worst experience was at The Eastman Dental hospital. The Professor there told me how "pathetic I was for not understanding how to self- manage" my powerful incapacitating mouth symptoms. She advised knitting as a therapy. I replied that I was a quilter. What a relief!  This was deemed to be good!

Yes Alison I do live in Poole. We love Studland. From our house we overlook the harbour towards the Purbecks, Brownsea Island and the Arne peninsula. All areas of nature conservation which David must have known so well. His parents too.  I am truly deeply sorry for your loss.
« Last Edit: February 28, 2015, 08:51:47 pm by patpinchin »
Pat