Author Topic: Newly diagnosed, very scared  (Read 1082 times)

Monica1

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  • Posts: 11
  • Reason for joining: Newly diagnosed
  • Diagnosed: 23/3/21
Newly diagnosed, very scared
« on: March 28, 2021, 08:15:51 pm »
Hi
I have worked in hospitals all my life which makes my diagnosis, informed a week ago very scary. I have been unable to eat since then. Awaiting an appointment at NAC.
Although I don’t know the type yet, I suspect AL. It is in my kidneys post biopsy and I have had cardiac symptoms since Xmas, wrongly diagnosed as a possible PE. I can barely walk 20 yards without bp dropping, breathlessness and dizziness. What scares me so much is that I am allergic to so many drugs and don’t think I would ever tolerate chemo I throw up and get diarrhoea after I eat certain foods. I have what you would call a sensitive system. Help. Can anyone give me some hope?

David J

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  • Posts: 6
    • Fibrinogen Amyloidosis
  • Reason for joining: I have a fibrinogen amyloidosis mutation but am currently asymptomatic.
  • Diagnosed: 2011
Re: Newly diagnosed, very scared
« Reply #1 on: March 28, 2021, 10:24:04 pm »
I remember going to a local support group meeting years ago where there was a relatively young patient with AL amyloidosis who used to lead a very active life but the amyloidosis had confined him to a wheelchair. He was quite gaunt and looked like he had just been pulled out of a hospital bed and wheeled to that meeting. I did not expect to see him at many more meetings.

A few years later he was well enough that he and his wife started making babies again. There is definitely hope.
AFib Glu526Val (asymptomatic)

Monica1

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  • Posts: 11
  • Reason for joining: Newly diagnosed
  • Diagnosed: 23/3/21
Re: Newly diagnosed, very scared
« Reply #2 on: March 29, 2021, 11:45:17 am »
Thank you for your reply. I realised I have put this in the wrong place!  Wasn't sure how to post. I guess he had youth on his side but it is helpful to hear success stories.

Miriam Vered

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Re: Newly diagnosed, very scared
« Reply #3 on: March 29, 2021, 12:49:52 pm »
Hello Monica, welcome to the forum, I'm sorry to hear about your illness.
There are many success stories from patients with amyloidosis of various ages . You might like to take a look at the "patient story" sections in our NAC newsletters here: https://www.ucl.ac.uk/amyloidosis/national-amyloidosis-centre/newsletters
Many of these stories feature people who are doing well for many years after being diagnosed with amyloidosis.
I hope this helps.

(I've moved the topic to the discussions board.)

Monica1

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  • Posts: 11
  • Reason for joining: Newly diagnosed
  • Diagnosed: 23/3/21
Re: Newly diagnosed, very scared
« Reply #4 on: March 29, 2021, 01:25:01 pm »
Thank you Miriam. The loss of ones mobility after being very active is a hard one to deal with and so relatively quickly too.

Bambiidog10

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  • Posts: 1
  • Reason for joining: Brother has AL Amyloidosis patient
  • Diagnosed: 2002
Re: Newly diagnosed, very scared
« Reply #5 on: March 29, 2021, 09:45:19 pm »
Hello Monica, My brother was diagnosed with AL Amyloidosis in 2002. He has had 6  chemotherapy treatments with good results and a stem cell transplant in 2009 which gave him 4 years remission. He is now 79 and is having another Chemo round as he has unwell with Cardiac Amyloidosis along with the kidney involvement he always had.
He has lead a fairly normal life, enjoying holidays and family life and we are hopeful that he will gain remission again and
get back to enjoying life.
Your positivity will get you through,
Brandy

Monica1

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  • Posts: 11
  • Reason for joining: Newly diagnosed
  • Diagnosed: 23/3/21
Re: Newly diagnosed, very scared
« Reply #6 on: March 30, 2021, 05:08:11 pm »
Thank you bambidog. Because of how limited my mobility is now and having worked from home since March 2020 (I live alone), this has been a very distressing time. Telling family members has left me distraught.  Covid has meant delays in diagnosis and I just hope something can be done.

Richardpreston

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  • Posts: 32
  • Reason for joining: Patient, AL amyloidosis
  • Diagnosed: 2010
Re: Newly diagnosed, very scared
« Reply #7 on: March 31, 2021, 03:57:13 pm »
Hi Monica

I was diagnosed ten years ago - no it's eleven now! In those days treatment options were very limited.  There are many more drugs available now and some are far less toxic than the ones I started on.  I cant walk very far without getting exhausted and it is still frustrating not to be able to do things I used to take for granted.  But there is lots I can still do and I have more time to do them!

Richard

Monica1

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  • Posts: 11
  • Reason for joining: Newly diagnosed
  • Diagnosed: 23/3/21
Re: Newly diagnosed, very scared
« Reply #8 on: April 01, 2021, 01:06:05 pm »
Dear Richard Preston
Thank you for your message. Today I woke,up again in despair. I can’t walk more than a few yards and am mostly confined to bed, and unable to look after myself. My consultant who rang me said you don’t know it is in your heart. And it is Like I do, why don’t you?  I thought how arrogant and blind can a doctor be?  He told me to get help,to,go and get my light chains done as he had omitted to do them. Like I can’t even walk five yards... Unfortunately, there are too many like that in the nhs. I have worked too long in it. 
This morning I started to write my suicide note. Something told me to look on the site and I,got,your message Richard PReston, a ray of hope and chink of light in the darkness. So, ty for that. I,will,hold,on for a few more days.  I think my biggest fear,is that I,will,get,to,NAC and they will turn me away saying I am too far gone. That frightens me. In my note I have instructed myfamily,to raise awareness of the thousands of people,who,have had,delayed,diagnoses in the second wave and did not get the help they so desperately needed.

Miriam Vered

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Re: Newly diagnosed, very scared
« Reply #9 on: April 01, 2021, 01:34:56 pm »
Monica, I'm so very sorry to hear how you've been feeling. I've spoken to the senior doctors at the NAC and they assure you that they will not turn you away. I gave them your email address and they will contact you. If you'd like to send me a private message (either via the forum or to miriam.pepys@ucl.ac.uk) with your phone number someone from the NAC will call you.
« Last Edit: April 02, 2021, 01:47:56 pm by Miriam Vered »

Richardpreston

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  • Posts: 32
  • Reason for joining: Patient, AL amyloidosis
  • Diagnosed: 2010
Re: Newly diagnosed, very scared
« Reply #10 on: April 02, 2021, 11:02:20 am »
Hi Monica

Its less than a week since you first post and already things are moving. I remember sitting in the NAC with the then unknown, to me, Dr Gilmore hiding back the tears as he explained AL Amyloidosis to me.  He did not hide the seriousness of the illness but I remember the story of one of his octogenarian patients still going to work every day.  I decided I was going to be like that. Two years earlier I had started up my company and left a good job and I wasn't going to let an illness I had never heard of stop me,  I decided I was going to carry on as normal until I couldn't any more.

What was normal didn't last long and so I found new ways of getting things done and new things to do.  My most successful business year was run partly from my, brief, stay in intensive care in Blackpool Victoria Hospital and a slightly longer stay on the haematology ward.  I have a raft of stories about my varied dealing with the NHS - my favourite is being hypnotised to overcome needle-phobia to the point of being able to inject myself.

You are having a tough time but it will get better now you are in direct contact with th NAC. 

Let us know how you get on

Richard

Monica1

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  • Posts: 11
  • Reason for joining: Newly diagnosed
  • Diagnosed: 23/3/21
Re: Newly diagnosed, very scared
« Reply #11 on: April 03, 2021, 06:46:04 pm »
Hi Richard
I was immemely grateful for the intervention of a senior figure in the amyloidosis world. I was admitted to the Royal Free yesterday and out this evening. Despite 7 day working meant to be embedded in the NHS, cannot do anything until the centre is open.  Tests show likely in my heart (tell me something I don’t know). Still don’t know type. I have been immensely sad at not being able to Even walk five yards and having to travel by chair. I don’t know how long this despair will last but for sure my life has changed for good.

Monica1

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  • Posts: 11
  • Reason for joining: Newly diagnosed
  • Diagnosed: 23/3/21
Re: Newly diagnosed, very scared
« Reply #12 on: April 04, 2021, 09:40:25 am »
Well, I have worked in the nhs all my life but I am also a writer. I have decided to write about what I am going through. What I do know is that when you have a devastating diagnosis how people are with you is very important. I am also empathic so I feel what others are feeling which is why it made it so hard to tell my nearest and dearest as I feel their pain. I have asked family not to cry in front of me. I am quite  dismissive to haughty dismissive doctors who have no empathy. Those on the ward round, being so detached and administrative with each patient, wanting the bed with the house officers or med students clinging on to their every word, feverishly looking up results they did not have to hand. Oh so you have suicidal ideation  let’s get the psychiatrist. I rolled my eyes and I think he changed his mind then and there. We can get you a walking stick. Another roll of the eyes, but maybe that’s just me being stubborn and vain. The  Royal Free ED department were wonderful, the ward patchy. The food is truly dreadful. I eat organic so what a difference. You have to work darn hard to make food as bad as that. is everything powdered?  The ambulance driver taking me home, so very kind helping me up the flights of stairs to my flat. A very kind person and I realised that even in the most menial of jobs people can fulfil their mission in life and help others. But as I had not eaten for six days so getting something in my system, even crappy has helped.
My partner who was worried sick comes round this morning. We got engaged officially on this last Xmas day but there won’t be any soap opera deathbed weddings here, just the thought of doing a soap opera tragedy gives me a yucky feeling. I won’t write everything on here but today on my return home, I just got a little inspired in a truly appalling situation.

Richardpreston

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  • Posts: 32
  • Reason for joining: Patient, AL amyloidosis
  • Diagnosed: 2010
Re: Newly diagnosed, very scared
« Reply #13 on: April 05, 2021, 12:22:06 pm »
Hi Monica

"I just got a little inspired in a truly appalling situation."

Do you mind if I borrow this quote?  I have been wondering how to write my stuff for a long time and this might have given me the way to start. 

The key for me is focus on the inspiration - true inspiration is a wonderful thing and gives fresh impetus when the going gets tough.  It also rubs off on those around you and lifts them.  It takes effort and practice at first and then become a habit. Keep posting!

Richard

Monica1

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  • Posts: 11
  • Reason for joining: Newly diagnosed
  • Diagnosed: 23/3/21
Re: Newly diagnosed, very scared
« Reply #14 on: April 05, 2021, 03:25:54 pm »
Hi Richard
Yes of course you can borrow that quote. I go from inspired to wanting to get things done. With a BNP of 1300 I hope docs listen to their patients when they say it is in their heart. I am resting up, feeling family’and friends worry and love. Soon I hope things will move.