Together we can save her life

PLEASE IF YOUD LIKE TO DONATE MESSAGE ME ON FACEBOOK PRIVATELY FOR THE ACCOUNT DUE TO GO FUND ME TAKING A HUGE AMOUNT FROM IT. THANKYOU SO MUCH FOR YOUR CONTINUED SUPPORT IT MEANS SO MUCH TO US ALL ❤️

In 2012 aged 45 our mum was told that she needed a liver transplant, or she was going to die ”How long have I got” she asked ”How long is a piece

of string” she was told. Mum who fortunately is strong minded and

optimistic just took it in her stride and has just worked through it by

putting all her strengths and efforts into her career by helping

vulnerable adults and children.

Its hard to accept that all of this has been caused by a drug called

Methotrexate which was prescribed to her from 1987 - 2008 to control her

severe psoriasis. This drug is a strong medication, a type of

immunosuppressant used to slow down your body's immune system helping to reduce the inflammation.

Mums' diagnosis is (Non-Alcoholic) Nash Cirrhosis, Lymphoedema,

Fibromyalgia, Hepatic Encephalopathy, Malnutrition, Stomach Ascites,

Portal Hypertension, Kidney Disease and Oesophageal Varices.

In December 2022 our loving mum took a serious & rapid decline in her

health which left her with no choice but to leave the job she loved after 14 years and was hospitalised on & off from then with a variety of liver related issues, the main ones being E-Coli in her blood due to the fluid

collections and her stomach ascites needing to be drained more often leading to a permanent drain being fitted in her stomach. It was around

this time that mum was fitted with a nasal jejunal tube to try and reverse the extreme malnourishment that she was suffering from but every time they

tried to remove the tube her weight plummeted again.

In May 2023 Kings College Hospital decided that it was time that they completed an assessment for mum to put her onto the national transplant

list. The assessment was carried out over five days in hospital. Mum was informed that they needed more information about an operation performed at a different hospital fourteen years ago and wouldnt agree to add mum to the list until they had received this information. We had to request this information ourselves due to Kings College hospital taking their time in

requesting it, this was received in June 2023.

Over the past 2 years we as a family have had to fight very hard to overcome numerous hurdles. Tracking down information from fourteen years ago wasn't easy. Mums Consultant, Dietician and coordinator left the trust, so we feel we have been let down not having their support having

built up a relationship and trust.

Whilst being listed since August 2023 Mums had two calls for DCD donors, unfortunately the livers were not suitable. Her last call was last February.

Each time we have the call and go through the motions it is very upsetting when they havent gone ahead. With it being a life changing operation and with us so desperate for Mum to receive her new liver we are all left feeling

devastated. Having been told In January 2024 by a consultant that they would be surprised if she will be alive for the next year was also devastating to hear. If this is the case then why isnt she at the top of the liver transplant list, clearly the algorithm is not working.

At a routine appointment on 27th December 2023 a surgeon from Kings College informed us that mum could have a live donation too and maybe should ask to be referred to the Living Transplant team. We contacted Amy who at

the time was the living donations coordinator and she arranged for me and my four other sisters, her granddaughter and adopted daughter to have our

bloods tested to see if we were compatible with Mums, only one of us was.

We felt a bit disappointed but at least one of us was. Mums blood group is B which only 2% of the population have. To receive a Living transplant from a live donor

The donor needs to have either B or O blood group. For Cadaveric livers DCD or DBD only have B group offered.

My oldest sister Chelsea was accepted as a donor for mum and undertook weeks of extensive testing, attended meetings with surgeons, specialist nurses, Liver Consultants, Liver coordinators, ICU Consultants and

Specialist ICU nursing team. This would be one of the first adult to adult living transplant completed at Kings as they usually only do adult to child. The date was pencilled in for the operation as the 10th of June 2024. This was then cancelled due to the cyber-attack Synovus on the pathology (blood) service that hit Kings, Guy, and St Thomas Hospitals.

You can imagine what a big disappointment that was. This was then rebooked for the 10th of July.

On the 9th July 2024 our world fell apart when the coordinator contacted my sister to explain that the MDT (multi-disciplinary team) had decided not to go ahead as they felt it was too risky to mum. Amy was really upset as

she had grown close to us and had never had this happen before. We insisted on seeing the surgeons that said this was too risky and didnt want to operate, we waited and waited and then eventually one of the surgeons agreed meet with us. He said that my sister has a complex liver

which means that she has 2 of most of the veins and arteries that are needed for each person, which means that the re plumbing part of it too mum would require a good degree of expertise which some of the team didnt feel that they had.

We asked if he also disagreed with the surgery as he was the main Surgeon for the Living Donor team. He advised us that the operation is do-able but not without its risks and he understands that we as a family had discussed this and were happy to accept the risks but our mum was actually in a privileged position even though she is dying as she is eligible for a cadaveric liver, either DCD, DBD liver or a Hepatitis treated liver and he

thinks that living donor transplants should only be used for north eastern countries where the religion there reduces the option of a cadaveric donor.

Apparently, these patients fly over from their own countries and complete this surgery within his and others private clinics.

We asked for a second opinion from St James in Leeds in August 2024 and yet again not the news we wanted to hear, it felt like another door had been slammed in our faces as they agreed with Kings. So, for the Liver transplant to be done at Kings hospital, we need a donor, DBD or

DCD or hepatitis treated liver. The waiting on this list is excruciating for obvious reasons. The time is right for Mum to have it done here at Kings should she get the call and it goes ahead.

That other third option came in the form of a support network group of previous transplant patients who had also had the same sort of experience as we have had, and they had eventually had to go and get their living donor surgery done privately abroad. So, with other people supporting us we found a surgeon in India who had completed this operation on a few

people from our Liver group.

We asked both professors from Kings and St James about this surgeon and was told by both that Dr Soin was the second-best surgeon in the world for carrying out this surgery and if he cant do it nobody can. They knew him

in a private and professional capacity as he was originally from

Birmingham but now, he carries out live liver transplant surgery at one of India's private hospitals in Delhi. 

On talking it through with others they explained that on arrival in Delhi we would be met by private transfer to the hotel attached to the hospital and there would be three days of extensive extra testing and then on day seven we would be admitted for surgery. We would go into ICU following surgery for three days and then be in hospital for approximately another week. Chelsea would be able to fly home after two weeks but mum would have to stay in Delhi for three months to complete all treatments etc before she could travel home. The hospital would complete all the medical visas needed for both Mum and Chelsea and they would also have to take someone else with them to stay with Mum once Chelsea returned.

Now comes the crunch the total cost for all of this to save mums life is in the region of £60,000.

We need to raise as much of this money as we can as our mum is now in complete liver failure and needs this surgery as soon as possible.

Please help us to save mums life, we need her in our family. She is the glue that holds all of us together children and grandchildren and we cannot let her die because of money. £60,000 seems a long way away for us. As a working-class family its money that we would never see, and it would be unbearable not to be able to help her. She has helped so many people in her lifetime we are just hoping that some of that help may come back to her.

We are asking please if you could make a small donation.

Thank you in advance.

The Hodges Girls:

Chelsea, Ebony, Tierney & Lacey