Diagnosed with NASH 06/13, this wk was told I won't get on transplant list. 6-12 months to live. Feels very unreal! Any support/ideas etc?

I am a positive 51 year old, living in Suffolk, who 18 months ago was made redundant from a senior role after 20+ years with a Major Construction Company. 12 months ago My wife of 26 years moved back to her parents with my 3 sons. It was assumed I had been suffering depression so I was first Diagnosed with NASH in June 2013. I was sent to hospital for a chest drain and ended up seeing a Liver specialist who immediately admitted me to hospital where I stayed until August. This week I was told that even with medical intervention I won't be in a position to get on transplant list (apnoea/weight/blood problems) which must happen within 4-6 months. Stat's indicate 6-12 months to live without intervention (if I simply look to achieve quality of life whilst maintaining a sensible diet and exercise). I Have told friends and family but whilst they have shed many tears it all feels very unreal to me and I keep thinking I'm going to wake up in a minute! Any support/ideas/encouragement etc. would really be appreciated.

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  • I am so sorry to hear this! Is it possible to seek a second opinion about the transplant list?

  • Discussion re transplant list was with Senior Consultant and a Transplant co-ordinator at Addenbrookes hospital. Have had 5 day assessment and been reviewed for surgery to facilitate transplant due to late diagnosis :-(

  • When will you know if you are on the list?

  • Have been told I won't be able to make list so concentrating positively on "Quality of Life" while still able too :-)

  • Hi. I also have NASH and have been told that I will not get a transplant becasue I am a diabetic, which affect healing (even though my diabetes is well controlled). Currently my liver is coping, so I do not need a transplant at present - I had oesophageal varices banded about 4 months ago - one small one remains which they are watching - it is too small to band at present. Does the hospital which you attend have a support specialist nurse service? Some do and some do not. The one I attend only had specialist nurse support for those having a transplant or with infective hepatitis - but nothing for NASH patients. A speciailist nurse could be your advocate - and also have access to your medical notes and your liver consultant. Hopefully he/she would also be able to explain all the 'why' and 'why nots' of the decision making process, and give psychological support.! - and explain all the test results. That support is rightly there all over the country for cancer sufferers, but not for other life limiting illnesses. I know what you mean about it all feeling very unreal - I discussed with my GP that whilst I fully understood what they were telling me at the liver unit, my head did not seem to realise it was me they were talking about! Good luck and let us know via these pages how you are getting on.

  • If I were you I would ask to be assessed in a transplant unit. They are the only department who can make that decision after extensive, nearly 5 day long tests. My husband was deemed too early for transplant but after the tests was listed. Nobody can tell the exact situation until this has been carried out and discussed at the Transplant MDT meeting.

    Carmick

  • Discussion re transplant list was with Senior Consultant and a Transplant co-ordinator at Addenbrookes hospital. Have had 5 day assessment and been reviewed for surgery to facilitate transplant due to late diagnosis :-(

  • I have just read your message thinking you have had so many low blows already....then to find out your life expectancy ....you must be in a state of shock! If I was in your position I would check and double check what the docs have said..ask questions to make sure you are clear about whys and wherefores. You can be treated wherever you want so research the best providers for your illness.

  • Hi Steve.

    I feel for you in this situation. I am also 51 and was suffering with NASH too, with my liver working at only 17% of its functioning capacity..

    Has your liver specialist referred you for transplant assessment, or has he/she made the decision not to refer you? If they haven't then I am confused as to why. The decision to put you on the list should be taken by an expert team of doctors after a week of stringent tests to see if you are fit enough to undergo a major operation. You should at least get the chance to prove to them you are fit enough, regardless of any pre-existing conditions. An independent decision by one specialist seems strange. I'd really push your doc for a referral, and don't take no for an answer.

    I know from experience that there is only a 50% chance at getting on the list after the assessment. To not be given even a chance even at that isn't right.

    All the best.

    Martin.

  • Discussion re transplant list was with Senior Consultant and a Transplant co-ordinator at Addenbrookes hospital. Have had 5 day assessment and been reviewed for surgery to facilitate transplant due to late diagnosis :-(

  • Have to say the entire Liver team at Addenbrookes have been brilliant. They have answered all my questions (which I sent in a letter ahead of my last appointment & would recommend as it was better for me and gave clear questions for the consultant to address). They have been very open and honest from day one. I certainly feel they have done everything possible and the Specialist Liver Team have offered to continue my support and treat me as best they can. It's mostly the anaesthetist who is calling the shots - as I simply won't survive the operation.

  • Hi Steve.

    Thanks for the update about what happened to you. I really appreciate your being so 'up front' about your prognosis.

    Have you done any research about the disease and any alternative therapies which might help? Taking a closer look at diet and nutrition information may help you better understand the illness. I'll be rooting for you.

    Martin

  • take a look a t the research being done on cannabiss

  • it worked for me

  • 20 minutes agostevehemp

    Use Of Cannabidiol (CBD) In The Treatment Of Hepatitis

    Oct 05 Posted by Brad Mossman

    Cannabinoids are known to interact with CB1 and CB2 receptors expressed in the nervous and immune systems mediating a wide range of effects, including anti-inflammatory properties. However, cannabinoids that bind are also psychoactive thereby limiting their clinical use. Cannabidiol (CBD) is the most abundant nonpsychotropic plant cannabinoid but has not been studied as extensively as Δ9-tetrahydrocannabinol (THC). The present disclosure reports the immunosuppressive properties of CBD and demonstrates that CBD induces apoptosis in thymocytes and splenocytes and inhibits the proliferative responsiveness of T and B cells. This indicates that CB2 selective agonists, devoid of psychotropic effect, may serve as novel anti-inflammatory/immunosuppressive agents.

    Claims

    1. A method of treating hepatitis in a subject, the method comprising:identifying a subject suffering from or at risk for hepatitis; andadministering cannabidiol to the subject; wherein said cannabidiol is synthetic cannabidiol or natural cannabidiol isolated from other natural cannabinoids.

    2. A method as in claim 1, wherein said cannabidiol is administered to the subject substantially free of any psychotropic agent.

    3. A method as in claim 1, wherein said cannabidiol is administered to the subject substantially free of Δ9-tetrahydrocannabinol.

    4. A method as in claim 1 further comprising providing said cannabidiol in a drug delivery vehicle.

    5. A method as in claim 4, wherein the drug delivery vehicle is a sustained release drug delivery vehicle.

    6. A method as in claim 1, wherein the method is an in vivo therapeutic or prophylactic treatment method.

    7. A method as in claim 1, wherein said cannabidiol is injected into the subject.

    8. A method as in claim 1, wherein the subject is suffering from autoimmune hepatitis.

    9. A method for inducing apoptosis of thymocytes in a subject, the method comprising administering to a subject an amount of cannabidiol greater than about 100 milligrams cannabidiol per kilogram mass of the subject, said cannabidiol being synthetic cannabidiol or natural cannabidiol isolated from other natural cannabinoids, wherein upon administration of said cannabidiol, thymic cellularity of said subject decreases.

    10. A method as in claim 9, wherein said cannabidiol is administered to the subject substantially free of any psychotropic agent.

    11. A method as in claim 9, wherein said cannabidiol is administered to the subject substantially free of Δ9-tetrahydrocannabinol.

    12. A method as in claim 9 further comprising providing said cannabidiol in a drug delivery vehicle.

    13. A method as in claim 12, wherein the drug delivery vehicle is a sustained release drug delivery vehicle.

    14. A method as in claim 9, wherein the method is an in vivo therapeutic or prophylactic treatment method.

    15. A method as in claim 9, wherein said cannabidiol is injected into the subject.

    16. A method as in claim 9, wherein the subject is suffering from autoimmune hepatitis.

    17. A method for inducing apoptosis of splenocytes in a subject, the method comprising administering to a subject an amount of cannabidiol greater than about 50 milligrams cannabidiol per kilogram mass of the subject; said cannabidiol being synthetic cannabidiol or natural cannabidiol isolated from other natural cannabinoids, wherein upon administration of said cannabidiol, splenic cellularity of said subject decreases.

    18. A method as in claim 17, wherein said cannabidiol is administered to the subject substantially free of any psychotropic agent.

    19. A method as in claim 17, wherein said cannabidiol is administered to the subject substantially free of Δ9-tetrahydrocannabinol.

    20. A method as in claim 17 further comprising providing said cannabidiol in a drug delivery vehicle.

    21. A method as in claim 20, wherein the drug delivery vehicle is a sustained release drug delivery vehicle.

    22. A method as in claim 17, wherein the method is an in vivo therapeutic or prophylactic treatment method.

    23. A method as in claim 17, wherein said cannabidiol is injected into the subject.

    24. A method as in claim 17, wherein the subject is suffering from autoimmune hepatitis.

    25. A method for decreasing the level of plasma aspartate transaminase in a subject, the method comprising administering cannabidiol to a subject exhibiting elevated levels of plasma aspartate transaminase, said cannabidiol being synthetic cannabidiol or natural cannabidiol isolated from other natural cannabinoids, wherein following administration of said cannabidiol, the subject's level of plasma aspartate transaminase decreases.

    26. A method as in claim 25, wherein said cannabidiol is administered to the subject substantially free of any psychotropic agent.

    27. A method as in claim 25, wherein said cannabidiol is administered to the subject substantially free of Δ9-tetrahydrocannabinol.

    28. A method as in claim 25 further comprising providing said cannabidiol in a drug delivery vehicle.

    29. A method as in claim 28, wherein the drug delivery vehicle is a sustained release drug delivery vehicle.

    30. A method as in claim 25, wherein the method is an in vivo therapeutic or prophylactic treatment method.

    31. A method as in claim 25, wherein said cannabidiol is injected into the subject.

    32. A method as in claim 25, wherein the subject is suffering from autoimmune hepatitis.

    33. A method as in claim 25, wherein the cannabidiol is administered to ysaid subject in an amount greater than about 50 milligrams cannabidiol per kilogram mass of the subject.

    PatientsRights.org.nz

  • Steve, we can only try to empathise how you feel. I lost my partner in similar circumstances only last week. As has been recommended by others, keep positive, follow advice from dietician expecially vitamin and salt. Try to make peace with yourself. I watched the fear on my partner which you will feel while able to do nothing but be there for him. We researched every day.

    I sincerely send you a huge hug and warmth with your journey and hope you will keep fighting. Where there is life there is always hope.xx Catherine

  • Thanks Caroline. I'm choosing to be positive everyday whilst inevitably "feeling" scared and lonely at times. Have made peace with myself (ish) but more importantly for me with God.

  • It is a little different in America. We are able to go to a transplant center to be evaluated for transplant. My GI doctor set the wheels in motion with his diagnosis. They use a MELD score for list placement. I was put on the list in August and transplanted in December. Go to the transplant center and beat on their door. Get an advocate as your HE develops you need the help.

  • Thanks for advice & encouragement. Due to a very late diagnosis I have been assessed at probably the best clinics in the UK and they confirm the very urgent requirement for a new liver. There are two major complications - They can't/won't approve me as suitable for a long operation (I would not survive due to other known conditions) and secondly any alternative treatments would negatively affect the liver condition such that I won't survive long enough to have the transplant. In the UK due to shortage of livers 20% of physically approved transplant candidates die whilst on the list. The average wait once on the list is 5+ months. With so few people in my position there are no support groups I can attend where I can talk to people in my situation. Unfortunately I am also contending with being made redundant after 20+ years with same company (now unable to work) and living alone after almost 27 years of marriage and amicable separation. My desire is simply live one day at a time, putting in and getting out, the most I possibly can until God calls me home. So often easier said than done.

  • HI Steve really feel for you will pray for you and pray that God will comfort and support you through this time. Bfn take care. x

  • Hi Steve. I also have just been diagnosed with NASH.Like you my faith is God now. Fall back in his arms. I will pray for you to will feel comforted x

  • Thanks Freckleface - praying for you too. Meeting GP tomorrow to discuss paliative care etc. Appreciate the support but discussions about hospices, treatment preferences make it all very real. My heart and prayers go out to all those who are facing similar questions, especially if they have to make them on their own (as I am - so I do understand a little...)

  • Steve - I hope you take the offer of hospice services up as soon as possible - it will vastly improve your quality of life - I work for one. We offer full family and friend support too, and all patients can access specialist doctors and consultants as both day cases and in-patients, we use complementary therapies to provide symptom relief and relaxation and yes, we do discuss end-of-life care - as we aim to ensure people get the death they want, either at home or in the hospice, as comfortably and with as much dignity as possible. I realise it's easy for me to say, I'm not in your position, and I feel very much for you - but every patient I speak to wishes they'd used the hospice so much earlier - had they known it wasn't a place to go to die - it's a place that improves the quality of life for anyone with a life-limiting diagnosis. Much love from the cold North East x

  • Thank You :-)

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