My beautiful 26yr old daughter lost her battle at 3.44am 14 Jan 2022 .
It doesn't feel real. She should have only been in hospital for 5 days for IV antibiotics. She had severe lung disease (PPFE) and was waiting for a double lung transplant. 3 hospitals were looking at her xrays and scans , the Sussex, the royal brompton and papworth. None of them could work out what was wrong with her only that she had a cough and her use of supplementary oxygen was increasing. Her lung capacity was down to 14% the last week so they were unable to carry out a Broncoscopy to take samples from her lungs. So they were guessing at antibiotics to treat her. When she went into hospital she didnt feel ill at all. But after 6 days started feeling crap and after a week suddenly her infection markers sky rocketed . Day 8 she deteriorated in the eve to be put in ICU at day 9. We were told her lungs were 'too badly damaged to get through this'. We weren't told what 'this' was though. We were too much in shock at that point that she had deteriorated rapidly.
She has always been a fighter and achieved so much in her short life. We fought to keep her antibiotics going tight til her final breath, but after day 11 never regained total consciousness. Losing her battle in the early hours of day 14.
The icu and respiratory depts could not agree a cause of death so has been referred for a post mortem and Thursday we learned that further investigations were started by the coroner.
My heart is broken. 💔💔💔
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Kcn3
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I’m so very sorry for your loss. Your daughter was very beautiful and I hope you get answers as to what happened. Thinking of you and wishing you the strength to get through this. Xx
Words will not convey my deep sadness for you and can only imagine the sorrow you are feeling. Such a beautiful young woman who should gave been able to enjoy a long life. I hope the powers that be can find the reason your darling daughter lost her fight so you can begin to come to terms with her passing. I am so sorry. Sending a warm, comforting hug. Xxx
There are no words any of us can say to ease the pain and heartache you are going through. A beautiful young lady taken far to soon. My condolences to you and your family and friends. You still have loving memories of her so you will never lose her from your hearts and minds. God bless and keep you all and may your daughter rest in peace. Thinking of you all take care 🙏😟 Bernadette and Jack 🐕 xxxxxx
Oh my dear, I’m so terribly sad for you at reading this. The sorrow you must feel at having lost your beautiful child is unimaginable. To die so young, and with no chance of a transplant, is yet more proof of how terribly cruel and unfair life can be. I hope you can at least get some answers from the hospitals concerned. Sending love to you and your family x
• in reply to
Yes yet another instance of how life is unfair isn't it?
So incredibly sorry for you loss!! Just to say I feel your pain right now😓 hope in time you are able to get the answers you need,words can't describe the pain of losing a child🙏 sending a helping hug x
Although I know neither you nor your daughter, I am so, so sorry for your loss. I can't being to imagine the despair you currently feel, but I hope in time you will find enough peace to remember the happier times and the doubtless beautiful memories you built together.
So sorry.
I'm sorry to hear thats happened and it must have been a right shock to you and it feels so unfair seeing how young she is as well.
I just can’t imagine what you are going through and no words to express how truly sorry I am for your loss Your daughter was absolutely beautiful. I hope you get the answers you’re looking for and in time the pain becomes easier to bare 🥲🥰 xx
I am so very sorry for the loss of your beautiful daughter. I hope you get some answers soon. My deepest sympathy to you and your family at this sad time 🥲
Oh my what an awful time for you and your family to see your beautiful daughter pass away. I hope you get answers soon. Sending you hugs and deep sympathy xx
Please accept our sincere condolences,sometimes when our lungs are so severely damaged as were those of your beautiful daughter even a simple infection can overpower us and often antibiotics are the only solution left to help us fight it.I do hope you get satisfactory answers from the hospital that show this was the case even though obviously that is no consolation for your loss.
RIP young lady and may the memory of you help heal those that you have left behind and grieve for you.
This is awful, awful news. I cannot imagine the grief you must be going through at the moment. Your precious child is now no longer in pain or struggling to breathe. I know making sense of all of this is impossible, but I know you will remember all the love , laughs and good times more than this loss over time. I am so very sorry for your tragic loss. 🌹
I am so sorry for your loss. I hope you will have the patience and support you need to get through this nightmare. We are all on this path. Some of just get there quicker than others. Best of luck.
Very sorry for your loss, such a young age, to lose one so beautiful, my thoughts are with you. I appreciate it's very raw at the moment, but if you think the hospital have made massive errors, you must seek legal advice immediately, whilst a post mortem is taking place, they need to be made accountable for your loss, if they are to blame ❤️
Oh my goodness that is so sad and I am very sorry for your loss x she looks so beautiful in the photo and you have to take comfort from having 26 wonderful years with her.I really hope you get some answers as to why.
Such a tragedy, I lost my husband just before Christmas but he was 86 and we had 62 years together, so sad for you, life is so unfair. Deepest sympathy.
Thankyou Kcn3 for your courage in being able to word this tragedy out. It is the very worst kind of news and we all feel helpless in hearing news like this. Your daughter looks vivacious and beautiful and may her smile and her light always shine with you and around you. 🧡
I’m terribly sorry to hear about your beautiful daughter Kcn3, what pain you must be in to lose someone so young. You will never forget the memories of the happy years you have had with her, as you live your life without her.
So sorry for the loss of your beautiful daughter. The additional stress of not knowing how? what? why? will be another drawn out process but I hope you get conclusive results from the post mortem that she passed of natural causes although tragically so young and no fault of anyone else. She’s got her angel wings is no longer struggling. Fly high x
Oh my goodness. I am so sorry that you have lost your very beautiful daughter. I cannot begin to imagine how heartbroken you are. I hope the coroner gets the answers you and your family deserve. Your daughter will be in your heart forever. These will be difficult times for you and everyone who loves her and we will be here if you need to reach out xx
How tragic and painful for you-I am so sorry. What a beautiful daughter. I hope you find some closure after the post mortem, what s terrible time for you. 😢💔
All of our hearts go out to you Kcn3 with the the unimaginable loss of your beautiful daughter. It's utterly heartbreaking, she looks so vivacious and happy in the photograph. Thank you so much for sharing your news, a very brave thing to do and I hope in a very tiny way that we can help hold you up in this time of heartbreak and grief. My very heartfelt condolences to you and your family. Thinking of you with love
I’m so sorry and saddened. Your daughter looked amazing and I can’t imagine what you have all gone through. Sending you my condolences and hope you find strength and get your answers soon xx
It's too painful to try imagine or understand the heartbreak you must be feeling, it is our worst nightmare, losing a child, no matter what age 😪. Please accept my Condolences and may your beautiful daughter Rest in Peace ❤ xx
There are no words to ease the pain , and the extra tests called for only prolong the agony. I am sure though you would like to know what took your lovely young daughter after such a short life. My deepest sympathy goes out to you and your family at this very sad time. xxx
I’m newly back to this group after a six year absence so I don’t “know” you but I just felt compelled to write so say how VERY sad I am at your loss. Actually, now that I’m trying to say how I feel, the words don’t come to me. Your loss is absolutely devastating and I can only say that I’m sending love, hugs and prayers to you and your family. Xx
May your god help you through all the pain and give you wonderful memories of your beautiful daughter to sustain you for the future.such a loss must be almost unbearable.
I am so very sorry for the loss of your young and beautiful daughter. May you have love and support from those who love you and also have answers to the cause of your daughter’s ill health. Be so very gentle with yourself as your grief will be in direct proportion to your love, and your love will always be there for your daughter. Perhaps grief counselling. With much love and a gentle hug. xx 💕
I am so sorry for your sudden loss. You must be totally devastated at such a young age and such a beautiful picture too. My thoughts are with you and the family. I hope you get some answers to help you find peace. Brian
Feeling deep sadness for you. It's the suddenness and meaningless finality that must be crucifying your broken heart. I hope the post mortum report will go some way to help you understand what or why this tragedy happened. Have you had a moment to discuss with your dear daughter's Consultant or primary care GP? My prayers are with you.
On friday I have requested to speak to the consultant that mainly dealt with Nathalie, who whilst he was on duty was excellent and very caring. Problems occurred with evening and weekend staff.
There’s nothing I can say to make things better. You have all the gentle hugs I can give. My daughters partner died unexpectedly on December 7th and the coroner wouldn’t accept the post mortem results so we are still waiting for answers.
That’s good. We got an interim death certificate which helped so we could have the funeral last week. My daughter has moved back home fora while, but she can’t do anything until we get a full death certificate.
I have received the fact of death letter from the coroner so tomorrow will call the registrars office. We were told we could now arrange the funeral as the pathologist had taken lots of tissue samples. Even though I don't have the full death certificate.
So, so sorry, Kcn3. Your daughter looks such a lovely and lively person and you are bound to have thousands of wonderful memories to help you in future but that doesn’t help right now, I know. I hope that you get some proper answers to all your questions - please let us know how you get on? We’ll all be thinking of you with sympathy and love ❤️
So very sorry to hear of the sad loss of daughter. All the worst for the mystery surrounding it i suspect. So very very heartbreaking for you and family.
So sorry for your loss and to have your life stolen from you at such a young age when your whole life should be ahead of you is something words fail me.
That is so sad. I am so sorry for your loss. I am sure you never thought your beautiful daughter would go before you. Such an awful pain to bear. Hopefully in time you will be able to recall all the beautiful memories you shared. I hope you get the strength from somewhere to get through this. x
I am so sorry about this dreadful loss, all I can do is say a prayer, for you, your daughter and all your family. It is a sad reminder, that no matter how many advances we have made, there are still some things we cannot do.
I'm so saddened to hear of the devastating loss of your beautiful and courageous daughter. There are no words to provide comfort for the shock, heartache, anger and uncertainty you are feeling but my thoughts are with you xx
Not an expert but it seems that your daughter had Cystic Fibrosis and although life expectancy has improved dramatically for this condition over the last 20-30 years it is still a serious chronic disease. I hope the post-mortem will give you the answers that youu need at this time. Condolences to you and your family.
No she had Ppfe, Google it, it is very rare. She had leukaemia at 8yrs old relapsed at 12. Had a bone marrow transplant at 13. She had been absolutely fine til Nov 2018 when she developed a constant cough, then Feb 2020 she was told she had ppfe which is a rare result of the combination of her petite size 5'1, previous treatments of chemo, total body radiotherapy, bone marrow transplant and acute lymphoblastic leukaemia .
Thank you for the explanation. Unfortunately after all the other setbacks over the years it is very difficult even with the best care to get all the right answers. It is also difficult to accept that someone so young should have such a serious condition. It is most unfair but we have to accept that life is not always fair to us all.
The skies may be dark and the clouds heavy but the sun will shine again on you and your family. Best wishes, Chris.
Omg.So hard to read this, can feel your pain as you write.Excruciating heartache.Words hardly suffice. I hope that you get truthful answers & soon though nothing will take away the anguish. So so sorry.💕
This is just the saddest news. What a beautiful girl; your loss is inconceivable, unbearable and huge. Be kind to yourself in the coming months as you wade through the awfulness, and please get support from Cruse or similar after the necessary stuff - I’m so very sorry 😞 sending love
I really don’t know what to say I feel so terribly sorry for your loss she was so beautiful god bless you and your family DONT GIVE UP SORT THIS ITS THE ONLY WAY LOVE HUGS ALWAYS am broken hearted for you SUESAL 💜🧡❤️💜🧡❤️🦊🐝🍓💙🌻🌻🌻🌻🌙🌙🌙🌙🐝🐝🐝🐝
I am so sorry for your loss, this is such tragic news. I hope that you will get full answers as to what happened and as to why there were no treatments possible. I cannot begin to understand what you are going through and just want to send my condolences.
Such a tragic loss of your beautiful daughter, feeling heartbroken for you and your family. Hoping you can all support each other through this terrible time.
I'm so sorry for loss and how quickly everything happened to your beautiful daughter I hope you get the answers from the coroner , my heart is saddened for you xxxxx
😢 So sorry for your loss !What a beautiful young girl who "looked" the picture of health too 💔 !I googled Pleuroparenchmal fibroelastosis as I had never heard of this condition before.
So sad this was the result of treatment for leukemia when she was only 8 yrs old 💔.
My son is the same age as your daughter. I was really upset when I read your post and can only imagine what you are experiencing. I would be very interested in reading more about her short life and all that she acheived against the odds. It will be a challenging time when the PM results come out, so keep writing here. Bless you and family xxxx
Oh Kcn3, I am so sorry for your loss. What a truly terrible thing to happen. Your daughter looks so beautiful. I am thinking of you and your family. Take care, Maximonkey
I am afraid a similar situation occurred with my wife Kcn3 and she passed away in front of my very eyes due to incompetence in her final care,she also had IPF and would most likely have died due to her inability to fight infection and although my complaints via the Pals system where valid and their reply unsatisfactory i decided not to pursue the case knowing that there was no way i could bring her back and that by pursuing the case it would only exaggerate the grief i was already suffering.I reiterate that i hope you get a satisfactory response from the hospital concerned and her consultants.
I will never forgive the hospital concerned but sometimes for the better good it is something that has to be done?
Thank you ski schoolI have written everything down and have contacted PALS. They gave me the email for a formal complaint.
The pain is excruciating waiting for the investigation results. Not knowing if my beautiful daughter died needlessly. The slim chance of a lung transplant wiped out . 💔💔
I think Pals will do a more thorough investigation than in my case as the coroner is involved but your pain sadly will not be relieved by that investigation and its outcome but perhaps your anger will be reduced if it is found that indeed very little could be done to save your dear daughter which goes a long way to handling your grief in the long term.Regardless of the outcome i wish you strength and resolve in coming to terms with your loss.
When the palliative nurse became involved, he told us when she had passed there would be lots of official people holding our hands through everything as long as we needed it. Did you get this or any help?
The only person that has helped in any way is the admin man in the coroners office. A friend has told us of the 'tell us once' website . But I had to push the registers office for an ID number as a death certificate has not been issued.
No sadly i received very little support,perhaps a leaflet directing me to other agencies who might be of assistance,i am afraid that appears to be the normal procedure following a death in a hospital setting.🙃
My words will not take the pain away from the loss of a beautiful and much loved daughter. I am very sorry for your loss. My thoughts are with you and what you must be going through.Joan xx
I'm so sorry for this tragic loss of your daughter. I can't imagine that any words are of comfort at present. I send you all my love and deepest sympathy.
I haven't had the courage, these past few days, to respond to your poignant words. But I know that each response honouring your precious girl's memory will matter to you and will help, in some small way, to buffer the reality that confronts you at this unspeakably tragic time.
There is no sense in passing young. It goes against the laws of nature and nurture, against the natural order of things. Shock turns grief into a morass of raw emotions that engulf us and render us helpless, immobile, vulnerable.
There is a reason we come together at such times of sadness. The power of sharing is immense. This forum exists, in part, to bring solace when it is most needed. Many people here have grasped your outstretched hand and will not let go until you are ready.
I'm keeping you in my thoughts and holding your hand.
You will be reunited with your darling girl again one day. Imagine that reunion!
Thank you. Yes to all the lovely people of this site who have replied, it is like a virtual hug and I much appreciate it. I just want to cry but some days I run out of tears. The same goes for Nathalies boyfriend. My other daughter(28) is dealing with things differently by dealing with most of the paperwork and arrangements that is needed to keep busy, which is a massive help, but gets anger and frustration has come to the fore the past couple of days which is hard to deal with.
The pain is excruciating , still not knowing what the problem was that she initially went into hospital for, with the indescribable pain of why she suddenly deteriorated and died, waiting for the coroners results. 😪😪😪💔💔💔
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