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[Highwaywomble]

Hi,

Sorry If this reply to this post is too long

First I would just like to say that my wife had a chronic needle phobia and would be the first to say she that she didn't help herself and others when trying to have blood taken, but after many attempts over some years no one seemed to listen to her desperate requests for help.

After an ultrasound my wife was diagnosed with Gallstones 4 years ago and was told in a 5 min consultation by a consultant that he felt that because of her needle phobia nothing would done at that time and wouldn't be done until her pain got so bad she need to dial 999 for an ambulance.

At the beginning of 2019 her pain and breathing started to gets worse. In May 2019 after driving back from Spain and nearly home she was violently sick bringing up a large quantify of live blood, after talking to 111 I took her to our local hospital with the carry bag of blood, there she was seen by an out of hours doctor, who until I made him look in the bag with the blood in it didn't want to know about it, he then went on to tell my wife that because he thought he could smell alcohol in the bag he thought it was down to the amount of wine she had drunk on the holiday (she hadn't drunk hardly any alcohol while away (certainly none for 4 days travelling home) and the long drive back, he told her she should make an appointment to see her GP or come back to the hospital if it got worse.

The following morning she made an appointment at our GP’s and was seen by a GP see had never seen before, she immediately arranged some test including an ultrasound and spent a long time talking to her about her needle phobia and arranging some help with that.

A couple of weeks later in the middle of June 2020 she had the ultrasound in the morning and went back to see the GP for the results the same afternoon, we were both thinking she was going to be told that her problem was her Gallbladder/stones

Instead GP told her the ultrasound had shown a problem with her liver and that it also seemed she had a lot of fluid in her stomach, concerned the GP arranged there and then for her to be seen at our local hospital the following morning.

Again after she went to the hospital and explained everything and was examined, again she seemed to be fobbed off and was told (and these words will haunt me forever) that they didn't believe her condition was life threatening and she would be referred to a Gastroenterologist and be seen in 2-4 weeks. That appointment finally did come through for her and was for 16 weeks later, which turned out to be far to late by then

4 weeks later in July 2020 when my wife then collapsed at home and was taken by ambulance to our local hospital, there after a lot of blood transfusions and tests it was found she was suffering from severe internal bleeding from oesophageal varices, a liver showing signs of severe damage and very high level of large blood clots throughout her body.

She spent two weeks on a general ward while they tried to get things under control but along with other things, she developed an erratic heart rate and was moved to the High Dependency Unit and then to the Intensive Care Unit while they waited for a bed in a London' hospital Liver Intensive Care to become available.

At the beginning of August 2019, I received a phone call to tell me an intensive care bed had become available and that she was being blue lighted up to London.

After she got to there further tests showed she had also been suffering from NASH.

3 weeks into September 2019 and after many highs and lows she had another massive internal bled which required her to be sedated and put on a ventilator again, also because her first tracheotomy had been removed a second tracheotomy was put in, after which she wasn't able to verbally speak to me and I never heard her voice again

All the staff working in the Liver Intensive Care were amazing and tried everything to get her to a point where she could receive a desperately needed liver transplant, unfortunately following an amazing brave fight against a damaged liver, sporadic internal bleeding, a body full of large blood clots, peritonitis which required emergency surgery, numerous infections and other complications after 70 days in the London hospital Intensive Care in October 2019 she died.

Although it wasn't the ending anyone wanted or some expected I will be forever grateful to all the amazing staff who looked after her and for what they tried and did for her and us.

Two months after she died in December 2019 one of her closet cousins died in the same hospital, having suffered what I believed to be very similar health problems my wife had.

After speaking about my concerns to the hospital in London and our GP, blood tests were arranged for our 4 sons and I.

These blood tests identified that 3 out of our 4 sons have various potential problems including 2 with potential liver issues that mean they are now either receiving treatment or being closely monitored.

I had a blood test in December 2019 and was found to have high Haemoglobin levels, after a few more blood tests and X-Rays at the beginning of March 2020 the same GP that tried to help my wife arranged for me to have an ultrasound.

Following the Ultrasound the following day another GP contacted me and told me that the he was going to refer me to the hospital because the ultrasound had shown a mass in my right kidney that needed further investigation,.

I was very lucky and had an appointment with a hospital consultant a week later and a CT scan 6 weeks after that

The consultant phoned me with the results and told me I had a large tumour in my right kidney, but now required a more detailed MIR scan as the CT scan had also shown something in my left kidney as well.

Two weeks after having the MIR scan, along with Gallstones it was confirmed there was a large cyst in my left kidney but because of the tumour in my right kidney they felt they was a real need to remove that,

In the middle of June 2020, I had my right kidney and tumour removed and was told a few weeks later that the biopsy of that had shown that the tumour had been grade 3 aggressive cancer.

A follow up scan in October 2020 showed the cancer appearing nowhere else but did show Empyema /COPD in my lungs

I had another follow up CT scan in April this year and then had to have a MIR scan in May, because along with the Cyst they have now seen a small lesion in my remaining kidney

I have since spoken to my consultant and he has told me that because of the small size of the lesion they cannot tell if it is benign or cancerous yet but because of only having one kidney now they will just monitor the lesion with MIR scans until it is the size they can tell what it is.

Our 1st son has had various tests and is now waiting for an appointment to see a Gastroenterologist

Our 2nd son regularly has venesections done and recently underwent and is waiting for the results of a bone marrow biopsy to possibly help identify the cause of one or two of his problems, although his Haematologist consultant thinks his problems points more to his liver. he is also waiting to see a Gastroenterologist.

Our 3rd son is being monitored and has regular blood tests.

Our 4th son appears to be healthy at this time.

[bleeny]

I don't have the words to express how sorry I am to read your story. Your poor wife was really let down. I wish you and your family all the best with the treatments.

[Highwaywomble in reply to bleeny]

Hi, Thank you for your kind words.

[teletonetapper]

Please stay strong for yourself and, obviously, your sons. Such a moving post and life can be very cruel. Hearfelt strength for you and your boys future life. xx

[Highwaywomble in reply to teletonetapper]

Hi, Thank you for your kind words.

[Hidden]

Thank you for sharing your story, we are so sorry to read of the traumatic journey you have all been on and we send our sincere condolences for the loss of your wife.

[obssessive69]

I am very sorry for your loss. You and your sons have been through a great deal. I’ve wondered how much of this is hereditary and your story makes a compelling case. I have NASH and I was stunned to find that out. No one in my family has had it that I know of, but we seem to have this immunodeficiency thing that pops up. Good for you to take the extra step to check you and your sons. Good luck to you and me.

[Highwaywomble in reply to obssessive69]

Hi, Thank you for your kind words.

I did wonder if this could be hereditary or if there maybe something that triggers it, especially after my wife's close cousin experienced very similar health problems and then died 2 months after her and why then I asked the hospital and GP if they could test our sons.

One of the things that stood out for me was, that when she was found to have a liver problem and before she was diagnosed with NASH, the first thing every doctor she saw always asked her was how much alcohol did she drink and their disbelief when my wife told them she would hardly drink, now dont get me wrong my wife wasn't tea total but because of looking after the sons at home and me, my job and the shift pattern I worked the only time we would drink would be when we were on holiday or very special occasions. I hope all goes well with you,

[obssessive69 in reply to Highwaywomble]

I, too was looked at with some skepticism about not drinking, but that’s a fact. They say mine is due to my weight. I’m a little too heavy.

[Highwaywomble in reply to obssessive69]

Hi Obssessive69 , I am sorry for the delay in replying to you,

Hope you are ok

Apart from being blatantly accused by some doctors of being an alcoholic I was never told what the potential trigger or start of my wife's liver problems were and although I have got my theories I cannot not be sure.

My wife was never skinny but never huge either, she always tried to eat as healthily as possible and avoided fatty foods, cooking with fat, cakes and biscuits.

I do think for me it was a combination of things, including a number of missed opportunities to conduct a fairly quick, unobtrusive and painless ultrasound which I am sure would have shown up damage to her liver a lot earlier and why I would like to see that GPs have the resources to find patients at risk and why I a fully support the British Liver Trust campaign to Sound the Alarm on liver disease and its demand for faster diagnosis of liver disease.

Also when my wife was in the London hospital I was asked if she would agree to take part into clinical research the hospital were conducting into NASH and hopefully some good will come out of that as well.

Take care.

[utep99]

First, let me express my sorrow for your wife's condition. Having been through the qualifications for a transplant. Eat only home-cooked meals, NO ALCOHOL, if smoking stop immediately this will give her the ability to get a transplant. For a liver transplant, she will be awake for two IV's then when she is asleep, they will give her two IVs in the neck and an arterial IV. These she will not feel at all. She will be kept asleep for at least 24 hours or until they can pull the IVs from her neck. These IVs in the neck monitor the heart and the other is if she needs a lot of blood quickly. But as I said she will have to get two IV's so they can put her under, and she will awake with a new liver and can become on the road to recovery.

[Highwaywomble in reply to utep99]

Hi, Thanks utep99 for replying to my post, I am not sure if I explained it properly but my wife died while being treated and assessed for a liver transplant in October 2019