Linda Cooke 30th October 1950 – 21st January 2016
Our dear Linda Cooke sadly passed away peacefully with her son Andrew, daughter Helen and her best friend Bev by her side on Thursday 21st January 2016.There are special people in our lives who never leave us even after they are gone, Linda is without doubt one of those special people who will always be forever in our hearts, we will miss you.
Here is Linda’s Story……….
Linda was Trustee of the Alpha-1 UK Support Group and was always there, in person, on the end of the phone, by email and Facebook, to offer support and friendship to all who came within her sphere, no matter what walk of life they were from and no matter how ill, she herself was feeling….
Linda was always one of the first to welcome new members, who often had just been diagnosed, and had found the Alpha-1 UK Support Group whilst researching Alpha 1 on the internet. She would offer words of comfort, support and encouragement and somehow she always knew what to say to alleviate their fears of this little known illness. When a member was listed for a transplant, she would offer them love and support, and when they were lucky enough to get “the call” she was there to support their family through this difficult time.
But it wasn’t just within the Alpha 1 community that she was like this. To all her family and friends–, she was a tower of strength, always there for them. Your problem was her problem, she would laugh with you, cry with you, celebrate your successes and give support in times of need.
But for all this the centre of her world was her son and daughter, Andrew and Helen. Her world revolved around them and I know that she was happy in the knowledge that when the time came for her to leave this life, they would have Louise and Michael there to support them as well as family and friends.
Linda’s transplant gave her six extra years, sadly 3 of them with chronic rejection. Nevertheless, she maintained a strong constitution and was always thankful of a second chance of life and wouldn’t have changed a thing.
She was so very much more than these words that I have taken from emails that she sent to the Alpha-1 UK Support Group in May 2014. The first one is from a welcoming email she sent to a new member of the group, a brief outline of her Alpha journey, the second one is her celebrating her transplant birthday or tranniversary as the Alpha 1 community call it, remembering the day she got “the call”. And although she was in chronic rejection, she still remained optimistic with no regrets.
3/5/2014 – “My name is Linda I am 63 years of age and was
diagnosed a ZZ Alpha when I was 40 after years of being what Doctors called “chesty” and winters upon winters of bronchitis . I was wrongly
diagnosed as asthmatic. I had a company medical when I was 40 and emphysema was picked up, further investigations showed I had Alpha 1 antitrypsin enzyme deficiency…”
What is alpha-1-antitrypsin? Alpha-1-antitrypsin (AAT) is a protein mainly produced by your liver that is released into in your blood. There are other proteins called enzymes that are found in all parts of your body that help to make sure that chemical reactions in your body take place normally. Enzymes have many important roles in your lung, including removing bacteria and fighting infections. The AAT protein is needed to control enzyme activity to prevent healthy lung tissue being damaged.
What is severe alpha-1-antitrypsin deficiency? AATD is a rare, inherited condition that affects around one in 3,000 to one in 4,000 people in the UK. The most common reason for severe deficiency is if you carry an abnormal gene known as Z-AT, which affects the level of your AAT
protein.
To inherit AATD, a Z-AT gene must be passed on by both of your parents. If you carry two Z-AT genes, your AAT level will be only 10-20 per cent of what it should be. The AAT protein
affected by the Z-AT gene builds up in the liver. This means you don’t have enough AAT to control the enzymes in your body, so healthy lung tissue can be damaged. This can cause emphysema, especially if you smoke. Emphysema is one of the lung conditions known as chronic obstructive pulmonary disease (COPD).
“Unbeknown to me at the time I had married an
MZ man ( who
carried one bad gene ) and we had two children,a son Andrew who is MZ like his Dad ,and a daughter Helen who is ZZ like me…….my Mum and Dad were tested as MZ as were my two brothers.I was very fortunate to receive a double lung transplant in May 2009 at Papworth hospital in Cambridge, in fact it was 5 years ago tomorrow…my gratitude to my wonderful donor and her family is never ending ….sadly I have chronic rejection now but I’ve had that for the last two years so you can see I’m hanging on in.
My lung function at the time of transplant was 19% and I was very poorly …so I’ve been given another 5 years of life I wouldn’t have had. The criteria for a transplant then was to be 23% or below …that may have changed since then …..certainly the cut-off age has changed since I had my transplant ..it used to be 60 but they do them on older patients than that now.We have had members who have had transplants
last much longer than mine ….in fact at last year’s annual meeting we met a member who was 21 years post-transplant…isn’t that amazing ? ….and when I go to my check-ups at Papworth I meet many others who are 10 , 15 and more years post-transplant…I was just very unlucky.
You’ll see we don’t always just talk of our health …. we may have lost many things but fortunately we haven’t lost our sense of humour.
I have been a member of this group since 2000 and I’m now a committee member and trustee, I have learnt so much valuable information since I joined and made so many wonderful friends…I hope
you do too.”
04/05/2014 “Morning all….special day for me today as it is
my 5 year anniversary of my double lung transplant…it only seems like
yesterday…….
It was a bank holiday weekend just like it is now…my mum had been over for Sunday lunch as usual and I had been showing her my case for Papworth with my new pj’s and all the things I needed for after the
op.It had only been 9 days since I was listed and I had spent that time preparing things at home…getting my affairs in order and moving money into separate bank accounts to cover bills should I be away from home…cleaning the house, bringing all my washing and ironing up to date…I remember John Doyle said to me that I was like a creature nesting …..I finally finished doing all that on the Saturday and I sent a prayer up to God and said to him ” if ever there was a good time for my transplant now was it I was never gonna be more ready ” ..and he
answered because the next day Ann Thompson, my transplant coordinator, rang me around 5.30 in the afternoon…Mum and I had been watching the musical “Oliver ” Ann asked me if I was well and I replied “I was ” ….she then said “they may have something for me ” she asked me when I had last eaten and drunk anything and not to drink or eat anything from then on.
Everything went into action…I called the kids …neither were ready….I called my neighbours who had always agreed to be my transplant buddies at home …( I had always thought the call would come in the middle of the night ) they came over and Geoff took my Mum home for me…Penny ran around upstairs closing all the windows and switching things off…Helen arrived with her father in law…all were in a state of anxiety and panic, but not me ….I was so calm…where that came from I don’t know but there was a bubble of excitement running through me ..the song “something’s coming ” from West side story had been in my head for the past 9 days and it was in my head that day too …” who knows , could be , something’s coming something good , ..if I can wait”
By the time the car from Papworth came to get me, most of my neighbours had heard the news and were standing on their doorsteps waving me off and wishing me well…Helen and I got in the car (we were meeting Andrew at Papworth, as he was working at his Dads in
Surrey that day) As we turned the corner of my road the driver put the blue light on and the siren went off.
Helen and I looked at each other in amazement, at what had happened in the last half hour…the rest is history …..My thoughts, of course, are always with my Donor…I thank her every day for her precious gift and my thoughts are with the family today, as they remember the sad day they lost her, but I remain eternally grateful to them…”
Linda is now at peace, up there in Heaven, in the loving arms of her Mum and Dad, and chattering away ten to the dozen with Jane Hill, Chris Torrance John Doyle and all the Alphas that have been taken too soon.
R.I.P. Linda Cooke ….You can now breathe easy
30th October 1950 – 21st January 2016
Linda’s Funeral is Thursday 18th February at 12.45 at:
Easthampstead Park Cemetery and Crematorium
South Road
Bracknell
Wokingham
Berkshire
RG40 3DW
Afterwards at:
Easthampstead Park
Off Peacock Lane
Wokingham
West Berkshire
RG40 3DF
Linda’s family have requested that instead of flowers they would like a donation to Alpha-1 UK Support Group using the folling JustGiving page:
https://www.justgiving.com/Linda-susan-cooke
Published: 03/02/2016
This open letter is intended to give an update on the recent activities of the Alpha-1 UK Support Group on behalf of the Alpha-1 community in the UK, and to express the strong support of Alpha-1 Global and the Alpha-1 Foundation for those activities.
Karen North, an Alpha-1 patient and Chair of the Alliance, and Fay Whittaker, an Alpha-1 patient and member of the Alpha-1 UK Support Group, both spoke of their experiences with the condition and about the need for better care for Scottish Alphas.