Fear of transplant denial because of psychiatric illness

Posted by ljeva1968 @ljeva1968, Oct 19, 2023

I’ve struggled with illness anxiety disorder, depression, ocd, for decades. My ptsd started after I was diagnosed with NASH F3. I have horrific night terrors without the meds. I’ve had to be hospitalized a couple of times. I have panic disorder and take high doses of clonazepam and ambien. Im trying hard to find other ways cope with the anxiety. I’m not suicidal but long ago in the midst of panics I’d say I wish I was never born. I work extensively with a therapist weekly. Still trying various meds for the ocd and depression etc. my fear since my diagnosis has been rooted in denial of transplant. Idk how to convince a transplant team that if I’m ever blessed with a new liver I will treat like a baby and do whatever it takes to survive and fight.

I need advice, help, and mostly HOPE!!!! Please help!!

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@ljeva1968 Welcome to Mayo Clinic Connect. I certainly don’t have an answer to your question. I’ll ask @rosemarya , who has been through the transplant process, if she could answer your question.
Have you been told that a psychiatric illness could prevent your getting a transplant?

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I’ve read that it can. If you read about exclusion criteria for transplants, severe mental illness is listed as one…they often mention schizophrenia but I’ve seen major depression listed at times. I’ve also read that studies have found this to be an unethical practice. It’s ironic because my mental issues would improve if they give me that chance. When it comes to transplants, your life is determined by men instead of God. I believe God can touch the heart of men if that’s His will. I’m trying to trust more in God but it’s sooooo hard. I’m a health worrier, it’s something I struggled with prior to all this but I had it under control.

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@ljeva1968, I want to add my Welcome to Becky's welcome. As Becky has indicated, I have been thru the transplant process. I believe that your fear of exclusion is something that every potential transplant patient experiences for a variety of reasons. You are correct that severe mental illness is listed as an exclusion, but so are some complicates or untreatable physical conditions, along and smoking, alcoholism, and even being over weight. Trust me, you are not alone in having a pre-existing condition.
When a patient is evaluated, it is to be sure that the patient is strong enough to withstand a very complex surgical procedure. Sometimes a person has to undergo treatment, surgery, chemo, alcohol and tobacco withdrawal, and weight loss before qualifying for eligibility for an organ transplant.
Transplant surgery is not an easy process to experience. There is a huge amount of emotional stress along with physical sickness while waiting. And afterwards, a new organ must be protected from rejection by the strict adherence to schedule of anti-rejection medicines for the rest of a patient's life. Those are some reasons that the rules are so strict, and as you can see, not limited to mental health.

@ljeva1968, I commend you for working with a therapist. It is a step in the right direction for anyone who is experiencing what you are experiencing.
Who diagnosed your NASH, and who is treating tour NASH? Are they suggesting that you need a transplant?
I'm sending a hug and a prayer along with this post. ❤

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I have suffered with depression for many years and was still able to have my transplant for which I am eternally grateful.

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@rosemarya

@ljeva1968, I want to add my Welcome to Becky's welcome. As Becky has indicated, I have been thru the transplant process. I believe that your fear of exclusion is something that every potential transplant patient experiences for a variety of reasons. You are correct that severe mental illness is listed as an exclusion, but so are some complicates or untreatable physical conditions, along and smoking, alcoholism, and even being over weight. Trust me, you are not alone in having a pre-existing condition.
When a patient is evaluated, it is to be sure that the patient is strong enough to withstand a very complex surgical procedure. Sometimes a person has to undergo treatment, surgery, chemo, alcohol and tobacco withdrawal, and weight loss before qualifying for eligibility for an organ transplant.
Transplant surgery is not an easy process to experience. There is a huge amount of emotional stress along with physical sickness while waiting. And afterwards, a new organ must be protected from rejection by the strict adherence to schedule of anti-rejection medicines for the rest of a patient's life. Those are some reasons that the rules are so strict, and as you can see, not limited to mental health.

@ljeva1968, I commend you for working with a therapist. It is a step in the right direction for anyone who is experiencing what you are experiencing.
Who diagnosed your NASH, and who is treating tour NASH? Are they suggesting that you need a transplant?
I'm sending a hug and a prayer along with this post. ❤

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When I was diagnosed they gave me little hope NASH F3 was reversible and I’d eventually need a transplant. As far as the other criteria… I pretty much meet them. I’ve lost a lot weight (almost 100 lbs), I have support, insurance, etc. currently they’re not suggesting a transplant. I’m not at that point yet. I’m trying to prepare myself for what May come. I’ve worked in medicine and I’ve seen the suffering of liver patients. I’ve heard it’s like living daily with flu not to mention paracenteses that are needed. Unfortunately I’ve seen and know a lot about health and medicine issues. … that doesn’t help. I’m working on making my mind better. I’m compliant with my medical regimen..it’s simply my psych issues that are a challenge.

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I’m new here. I’ve struggled with significant depression and health anxiety since is was diagnosed with Nash F3 and basically told I’d eventually need a transplant even if I lost weight. The doctor told me I had about 10 yrs and then “I really needed to start worrying “; he wasn’t very compassionate at all. I also have ptsd. I work extensively with a therapist and psychiatrist. It’s been almost 10 years and the worry about this is escalating. I’ve lost a ton of weight, eat healthy and exercise as able because I have other physical problems that affect my ability to exercise as much as I used to. Exercise is one of the best coping strategies I use so I hope my current health issue resolves so I can get in good work outs again. I work daily to strengthen coping mechanisms but I still need anxiety and sleep meds as I otherwise have nightmares and horrific night terrors. I take clonazepam and ambien. My goal is to reduce my need for these meds. My question is, did anyone experience mental illness as a barrier to getting approval? Once transplanted, do they allow you to take anxiety/ sleep meds as living with a transplant is very challenging. Any advice is appreciated.

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@ljeva1968
I have no words that can express my feelings of sympathy and empathy towards you.
However, I can assure you that you are being held in the hands of your Creator. He loves you and wants you to turn your fears over to him. Just gather your thoughts and fears put them in a “box” and hand it over to him.
Put your hands in his hands, and relax. He’s got you.

Sweep. the cobwebs of junk out of your mind. You are worthy, you are loved, and you have the courage.

I pray for your healing from the top of your head to the bottom of your feet. Amen

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@ljeva1968

I’m new here. I’ve struggled with significant depression and health anxiety since is was diagnosed with Nash F3 and basically told I’d eventually need a transplant even if I lost weight. The doctor told me I had about 10 yrs and then “I really needed to start worrying “; he wasn’t very compassionate at all. I also have ptsd. I work extensively with a therapist and psychiatrist. It’s been almost 10 years and the worry about this is escalating. I’ve lost a ton of weight, eat healthy and exercise as able because I have other physical problems that affect my ability to exercise as much as I used to. Exercise is one of the best coping strategies I use so I hope my current health issue resolves so I can get in good work outs again. I work daily to strengthen coping mechanisms but I still need anxiety and sleep meds as I otherwise have nightmares and horrific night terrors. I take clonazepam and ambien. My goal is to reduce my need for these meds. My question is, did anyone experience mental illness as a barrier to getting approval? Once transplanted, do they allow you to take anxiety/ sleep meds as living with a transplant is very challenging. Any advice is appreciated.

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Because a transplant can be a very challenging situation the pre-transplant evaluation includes a psych eval to ensure that you are up to the challenge mentally, emotionally, physically …..etc. Your support system is usually evaluated too. There are so many factors that go into a successful transplant, the team wants to take everything into consideration to prepare for the best possible outcome. They should evaluate your situation to decide if transplant is in your best interest and to determine what preparation is needed to make it so.

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@ljeva1968

I’m new here. I’ve struggled with significant depression and health anxiety since is was diagnosed with Nash F3 and basically told I’d eventually need a transplant even if I lost weight. The doctor told me I had about 10 yrs and then “I really needed to start worrying “; he wasn’t very compassionate at all. I also have ptsd. I work extensively with a therapist and psychiatrist. It’s been almost 10 years and the worry about this is escalating. I’ve lost a ton of weight, eat healthy and exercise as able because I have other physical problems that affect my ability to exercise as much as I used to. Exercise is one of the best coping strategies I use so I hope my current health issue resolves so I can get in good work outs again. I work daily to strengthen coping mechanisms but I still need anxiety and sleep meds as I otherwise have nightmares and horrific night terrors. I take clonazepam and ambien. My goal is to reduce my need for these meds. My question is, did anyone experience mental illness as a barrier to getting approval? Once transplanted, do they allow you to take anxiety/ sleep meds as living with a transplant is very challenging. Any advice is appreciated.

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Yes, my transplant center ok'd anxiety and depression meds but I had to clear each one with them. Yes, having a transplant is very challenging for me. I do not hear much about patients like me having bouts of anxiety and depression and need hospitalization or just meds. But it is real and I am still having changes to doses of meds after 4-5 months of taking them. I am grateful for my kidney and recovery is a challenge in many ways. I face these living alone but my church community is helpful. Take care, BB

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