Aa
Advocating for myself. Where do I start after this?
I suffer from cirrhosis of the liver, due to alcohol abuse. I'm here for answers and support. And maybe to help someone else who is going down the same road I am. I was just removed from the Transplant List for missing too many appointments. I also suffer from Agoraphob ia and Post Traumatic Stress Disorder. I was shocked and really don't know how to react. I had no idea my mental health would make me "not worth the trouble" to this transplant team. I've followed all the rules, am doing my very best to stay healthy. Haven't had any alcohol in almost 3 and a half years. I guess I'm looking for advice on how to make them understand, I WILL show up if they find a match. I DO want to live. They seem to think I'm not being pro active. Some days I just can't make it past my front door. Believe me, if we ever got that call, I have a family full of love and a great support system. Anyone know how I could start to rectify this ?
Hi there Katz. Agoraphobia is a very debilitating disorder and I can understand why you were unable to make your appointments. With that being said, it shouldn't exclude you from the transplant list, but it can unfortunately.
I believe what happened around 10 years ago, viable healthy livers were being given to individuals whom were alcoholics, drug addicts, ect. and after their transplants they went back to there old ways and the new livers were again abused and in the end failed. This is why they are now so very protective of any livers available and rightfully so. When a liver is donated, its a treasured commodity and they want to ensure that its going to someone willing to adhere to there protocol.
What you need to do is explain your dilemma and honestly tell them why you haven't been keeping your appts. They may be thinking that you could care less, and therefore removed you from the list. I do believe that people in the medical industry have a sense of compassion and would understand.
I'm so sorry that this is occurring but should you appeal and explain, hopefully they will reconsider. Personally I went thru the requirements to
be listed and in order to become a recipient you need to comply.
Wishing you the best
......Kim
I believe what happened around 10 years ago, viable healthy livers were being given to individuals whom were alcoholics, drug addicts, ect. and after their transplants they went back to there old ways and the new livers were again abused and in the end failed. This is why they are now so very protective of any livers available and rightfully so. When a liver is donated, its a treasured commodity and they want to ensure that its going to someone willing to adhere to there protocol.
What you need to do is explain your dilemma and honestly tell them why you haven't been keeping your appts. They may be thinking that you could care less, and therefore removed you from the list. I do believe that people in the medical industry have a sense of compassion and would understand.
I'm so sorry that this is occurring but should you appeal and explain, hopefully they will reconsider. Personally I went thru the requirements to
be listed and in order to become a recipient you need to comply.
Wishing you the best
......Kim
I used to work as an organ recovery coordinator. I know the basic rules to being a suitable organ recipient. Social, mental, physical, and economic health must all be in balance.
I'm sorry you suffer from mental health issues, but if you miss appointments, when it comes to an organ being donated, it must go to the best candidate who can be trusted to do everything that is needed "after" the surgery.
So, if you missed appointments before getting a liver, how can the transplant team be assured you won't have a mental episode (sorry I forget exactly your dx), after transplant? Not only that, the immunosuppressive drugs post transplant might make your mental health worse (a guess).
To prove you are a good candidate means being on appropriate medication so that your mental health is no longer affecting or keeping you from being 100% normal. PTSD is treatable, as are most mental health diagnoses. You need to be stable. On meds, making 100% of your appointments, completely stable. You also need a social network so you have someone to make sure you get to all your appointments.
Keep in mind over 13 people die every day waiting for an organ. They too have to follow all the rules. When you have so many good candidates waiting, most transplant centers have policies in place to transplant the patient that is going to follow through with all that I started this out with.
Compliance is a huge factor in deciding who gets transplanted and who does not. You need to get yourself stable and re-apply or try another transplant center. First, you must be stable. All mental issues actively being treated.
You cannot make the transplant center change their mind by appeal. It is your behavior over time, just like not drinking, that will get you back on a list.
I'm really sorry you are suffering. I really hope you can get the help you need so a psychologist and psychiatrist can then appeal for you. First you have to be stable.
Good luck and best wishes,
Dbzc
(Please excuse any typos.)
I'm sorry you suffer from mental health issues, but if you miss appointments, when it comes to an organ being donated, it must go to the best candidate who can be trusted to do everything that is needed "after" the surgery.
So, if you missed appointments before getting a liver, how can the transplant team be assured you won't have a mental episode (sorry I forget exactly your dx), after transplant? Not only that, the immunosuppressive drugs post transplant might make your mental health worse (a guess).
To prove you are a good candidate means being on appropriate medication so that your mental health is no longer affecting or keeping you from being 100% normal. PTSD is treatable, as are most mental health diagnoses. You need to be stable. On meds, making 100% of your appointments, completely stable. You also need a social network so you have someone to make sure you get to all your appointments.
Keep in mind over 13 people die every day waiting for an organ. They too have to follow all the rules. When you have so many good candidates waiting, most transplant centers have policies in place to transplant the patient that is going to follow through with all that I started this out with.
Compliance is a huge factor in deciding who gets transplanted and who does not. You need to get yourself stable and re-apply or try another transplant center. First, you must be stable. All mental issues actively being treated.
You cannot make the transplant center change their mind by appeal. It is your behavior over time, just like not drinking, that will get you back on a list.
I'm really sorry you are suffering. I really hope you can get the help you need so a psychologist and psychiatrist can then appeal for you. First you have to be stable.
Good luck and best wishes,
Dbzc
(Please excuse any typos.)
Hey Randy, great to see you here. Really good news about your MELD score, so happy for you. I agree with you and HCNMe, having someone go with you to appointments is very important.
I know when I was treating my HCV there were days I was so sick I did not want to go. My husband helped by driving me. He also worked to convince me that as bad as I felt I needed to see the hepatologist. It was not easy, I felt so down and out.
Really good thread, thanks to all
Dee
I know when I was treating my HCV there were days I was so sick I did not want to go. My husband helped by driving me. He also worked to convince me that as bad as I felt I needed to see the hepatologist. It was not easy, I felt so down and out.
Really good thread, thanks to all
Dee
COMMUNITY LEADER
Hello and Welcome to Medhelp.
I’m sorry to hear about your situation, I too have cirrhosis caused from alcohol abuse. Congratulations on maintaining your sobriety, no easy task for people like us and that does demonstrate a strong desire to improve your condition. Make this your argument with the transplant center.
---------------------------------------------------
You must understand that there are a long list of others hoping and praying for a transplant in order to survive. Unfortunately the list of donors does not allow everyone to receive a transplant so it is critical that you along with everyone else do everything in their power to improve the health of the liver they have. The last time I looked it up, seven people will die each day while waiting for a transplant.
Your doctors want to help you do the very best you can but they can’t help you unless you attend every appointment. Preserving and prolonging the life of your liver is not only important for you but for everyone else that is also in need. Scenario: Take a patient that has a history of missing appointments and give them a transplant but he/she continues to miss appointments post-transplant and the liver fails then it is as if this gift was wasted. Do you think they should take this risk? Is this fair to the ones who passed while waiting? Receiving a transplant is an absolute gift of life, from the donor, doctors and recipient. If you agree with this then also make this your argument.
---------------------------------------------------
As mentioned above have a caregiver or loved one attend these appointments with you, I understand how hard it can be just to “make it through the front door” but you and your caregiver together need to make this happen to ensure your survival. If you feel like you can’t then your caregiver will make sure that you do. After all you mentioned you have a great support system in place so use it. Not everyone is this fortunate. An amazing amount of recovery is possible for persons with alcoholic cirrhosis. Mention these points I made above and also introduce your caregiver as the person you have selected to ensure you attend every appointment even on the days when you feel like you just cant. Then make every appointment after all it is for your benefit and theirs.
I was diagnosed 4 ½ years ago, my MELD has been as high as 15 and for the past couple of years it has hung around a 12 but as of recently it has dropped to a 7. Take little steps at a time my friend. Learn all you can to advocate for yourself as well as allowing your doctors to advocate for you. Educating yourself about your condition will allow you to better communicate with your doctors concerning treatment. This community has a wealth of information and is always standing by to offer support and help you with questions along the way. I’m very glad you found us. Again, welcome to Medhelp!
Best regards,
Randy
I’m sorry to hear about your situation, I too have cirrhosis caused from alcohol abuse. Congratulations on maintaining your sobriety, no easy task for people like us and that does demonstrate a strong desire to improve your condition. Make this your argument with the transplant center.
---------------------------------------------------
You must understand that there are a long list of others hoping and praying for a transplant in order to survive. Unfortunately the list of donors does not allow everyone to receive a transplant so it is critical that you along with everyone else do everything in their power to improve the health of the liver they have. The last time I looked it up, seven people will die each day while waiting for a transplant.
Your doctors want to help you do the very best you can but they can’t help you unless you attend every appointment. Preserving and prolonging the life of your liver is not only important for you but for everyone else that is also in need. Scenario: Take a patient that has a history of missing appointments and give them a transplant but he/she continues to miss appointments post-transplant and the liver fails then it is as if this gift was wasted. Do you think they should take this risk? Is this fair to the ones who passed while waiting? Receiving a transplant is an absolute gift of life, from the donor, doctors and recipient. If you agree with this then also make this your argument.
---------------------------------------------------
As mentioned above have a caregiver or loved one attend these appointments with you, I understand how hard it can be just to “make it through the front door” but you and your caregiver together need to make this happen to ensure your survival. If you feel like you can’t then your caregiver will make sure that you do. After all you mentioned you have a great support system in place so use it. Not everyone is this fortunate. An amazing amount of recovery is possible for persons with alcoholic cirrhosis. Mention these points I made above and also introduce your caregiver as the person you have selected to ensure you attend every appointment even on the days when you feel like you just cant. Then make every appointment after all it is for your benefit and theirs.
I was diagnosed 4 ½ years ago, my MELD has been as high as 15 and for the past couple of years it has hung around a 12 but as of recently it has dropped to a 7. Take little steps at a time my friend. Learn all you can to advocate for yourself as well as allowing your doctors to advocate for you. Educating yourself about your condition will allow you to better communicate with your doctors concerning treatment. This community has a wealth of information and is always standing by to offer support and help you with questions along the way. I’m very glad you found us. Again, welcome to Medhelp!
Best regards,
Randy
Hi I am really sorry this has happened. Do you have a doctor for your agoraphobia and PTSD? Can you try to write a letter to the transplant team and explain how serious this is...how there are days you can not walk out the door?
I hope they will reconsider.
Take Care
Dee
I hope they will reconsider.
Take Care
Dee
Do you have a family member or a friend that can come to your appointments with you and talk to your docs on your behalf?
I know that it is considered a big plus for those who have to evaluate who gets a transplant or not
They like to know that you have someone who is there for you - your support network
Good luck to you
In this scenario, you want to do absolutely everything to show that you are "compliant"
I know that it is considered a big plus for those who have to evaluate who gets a transplant or not
They like to know that you have someone who is there for you - your support network
Good luck to you
In this scenario, you want to do absolutely everything to show that you are "compliant"
If I were you I would go back and speak to the transplant people and let them know that you are serious about a transplant. Just make them understand, and don't stop till you do,, and don't miss any appointment because getting on the list is hard,, good luck
Hi my husband has been on the transplant list for 4 years, He has Hep C,, he has had nose bleeds, bad bruising, vomiting, liver cancer which they burned out,, He had a bleed out was on life support for 5 days and in the hospital for 20 days,, Its been a rough ride , Starting next week he will be taking a new pill for 12 weeks it is called harvoni,, It cures Hep c and he may not need a liver transplant afterwards,, I just hope it works
OH Dear. I just googled. I read wrong the first time. I"m so sorry. This must be so hard for you. Is he on the list?
I see the Transplant Team every 2 - 3 months. My Gastro Doc every 2 months. I missed 3 appointments in 1 years time. I'm at UMASS Outpatient.
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