Hello folks, it is with a very heavy heart that I let you all know that my beloved husband, James (Jim) Dailey passed away on Tuesday, October 27th due to End Stage Liver Disease resulting from PSC exacerbation that started in August of 2014. He had turned 65 years old in July. We had almost 28 years together, had a few rough patches (what married couple doesn’t?), but had many, many great times together with our children and grandchildren, and were planning many more adventures when I retired, which was supposed to be at the end of this year. Our time at Cleveland Clinic was a roller coaster, but Jim was treated with respect and had utmost quality care. I believe they did everything they could to help him, but his PSC was too severe and transplant could not happen. Jim was a school social worker and helped hundreds of children, parents & fellow employees throughout his 33 year career and had wonderful wit and such a kind way about him. What was saddest was that his cognitive functioning had diminished to where he couldn’t even answer a question the last week of his life. His poor liver could not filter any more and the toxins built up and affected his ability to mentally process. But I was able to get him home by medical transport on the 25th, get him settled in our room, get Hospice here, get his pain meds on board, and was able to hold him one last time a few moments before he died to tell him that I loved him and it was okay to go. I am devastated and his loss has left me with a permanent hole in my heart.
I appreciate the support I have gotten from everyone on this site and won’t ever forget all of your kind thoughts and prayers. I plan to help bring awareness to PSC somehow, someway, and if even one person can be spared the terrible outcome that my husband had, then I will feel like I accomplished something in my husband’s good name. Love to you all 
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I'm so very sorry for your loss.....
GMA, I am so sorry for the death of your husband. As a pscer, I would like thank you for all you did. Being a caregiver is very difficult most of the time, and heartbreaking with this outcome.
I hope that over time, your pain heals.
You and Jim are in my prayers.
Jeff
I am sorry about your loss. I will pray for you and your family.
So sorry to hear, Gma. You are in my thoughts at this sad and difficult time.
Dear GmaTD53,
My heart aches for you. I have been following you along the way through this. Prayers for peace and comfort to you and your family.
It sounds like Jim touched a lot of people over the years. So sorry for your loss.
I am so so sorry for your loss.
You are in my thoughts, GmaTD53. Pat yourself on your shoulder, and please take sometime for yourself.
Jeff,
Thank you so much for your reply. It is a very difficult time and I try to convince myself that I did all I could do, but being the perfectionist that I am, I keep wondering "Could I have done more?" In time I hope to finally realize that being a caregiver was what I know how to do best (I'm an NP) , and that I gave Jim the best I could give. For now though, I just miss him...he was my best friend. Again, I appreciate your kindness.Terri D. (Gma TLD53)
JeffDC said:
GMA, I am so sorry for the death of your husband. As a pscer, I would like thank you for all you did. Being a caregiver is very difficult most of the time, and heartbreaking with this outcome.
I hope that over time, your pain heals.
You and Jim are in my prayers.
Jeff
Thank you for your prayers. I cannot tell you how much that means to me at this time. I am learning how to be me in a different way. It is very difficult but I think at some point I'll make more sense out of it. I fully intend to do something to help bring awareness to others about how devastating PSC is and what needs to be done to keep others from suffering the way my husband did. When I know what exactly that "something" is, I'll post on the site. It's a very important cause to me.
GmaTLD53
Dolphin5 said:
Dear GmaTD53,
My heart aches for you. I have been following you along the way through this. Prayers for peace and comfort to you and your family.
I will try to do that at some point, but it won't be for a while. Life seems so surreal without my husband here with me any more. I mean, I know he is "with me" although not physically. It's a totally different way of life for me now. But I do than you for your kindness. It will not be forgotten.
GmaTLD53
Bluesky1000 said:
You are in my thoughts, GmaTD53. Pat yourself on your shoulder, and please take sometime for yourself.
Thank you Alix.
Alix said:
So sorry to hear, Gma. You are in my thoughts at this sad and difficult time.
Thank you Lisa. I appreciate the support.
GmaTLD53
Lousy Liver Lisa said:
I'm so very sorry for your loss.....
JTB,
My husband did touch a lot of people....his whole existence was meant to help others. Some of the people who came to calling hours & his service poured out their hearts to me about what my husband did for them or their children while he was a school social worker. It helped me to know that these people cared that much about him and what he was able to do for them-he did those things because it was the right thing to do and he was so good at it. I am very proud of him for that. I know he will not be forgotten by the community for it. Thank you for thinking of Jim and for your kind reply.
GmaTLD53
jtb said:
It sounds like Jim touched a lot of people over the years. So sorry for your loss.
Thank you for your kindness and your prayers. It means a lot to me. God Bless you!
GmaTLD53
liannearly said:
I am sorry about your loss. I will pray for you and your family.
IM SO SORRY FOR YOUR LOSS BLESSINGS TO YOU AND YOUR FAMILY
I know this response is three years later - so hope this request doesn’t bring back bad memories - would very much like to talk with you about the end stage - my father is 82…has been diagnosed almost 14 years and seemed asymptomatic for most of the time…I think we just didn’t know the symptoms to watch for and he has MS as well…so we were focusing on the MS…it now appears he is in end stage of his liver disease…and it’s even affecting his kidneys - he’s not a candidate for transplant or dialysis due to his age and general body strength…so we’re trying to manage his symptoms and will be bringing him home this next week - trying to understand the stages and care required at the end…would love your insights -
My husband nearly died before his transplant because his liver decompensated so quickly; so I’m familiar with many of the stages… loss of apatite, weakness, narcoleptic tendencies , decreased kidney function (in my husbands case; that required dialysis daily for 6-8 hours) , extremely severe muscle cramping (make sure magnesium intake is maintained for combatting that) which is so very hard to go through when weak, nauseous and on lactulose. There is also all the draining of the acities , continued hepatic encephalopathy, itching, and pain in the belly /enlarged spleen. I mean no disrespect and am so sorry to say; but in all honesty, it’s not pleasant. He didn’t have severe esophageal varicies but did have some banded off once so they wouldn’t hemorrhage out. I’d suggest researching online “ ESLD and hospice”. I also recommend reading “Being Mortal”; which may help you to consider how to navigate this difficult path. Best to know ahead of time. There is also someone in FB who posted about this yesterday. “Do Not Resuscitate”; Debbie Moore-Black, ICU RN . Someone mentioned on that post that DNR should be change to DND (die a natural death). Hospice is great for that. I hope I have not been too frank about this. Blessings and peace.
BC,
I was sorry to read of your dear fathers liver failure. Thank you for all you are doing to make his last days comfortable and meaningful. And on top of that having to deal with MS is no fun either. I’ve had several relatives who died with MS but lived many long and productive years until they became debilitated due to the disease.
I’m not sure if this is helpful or not, but I did find the following information off of a medical assistance web site. I’m simply pasting in the full paragraph dealing with this topic.
Please be assured of my prayers for you and your family at this time. Enjoy every day you have with him. You may be surprised at some things he will remember from when he was a boy or young man growing up that you’ve never heard before. Probe his mind and heart for old memories of early life. You will treasure them forever.
Mark
End-stage Liver Disease Symptoms Before Death
In the initial stage of liver cirrhosis because of portal hypertension, the liver tends to swell abnormally, a condition called splenomegaly where surface becomes irregular. The normal detoxification of ammonia to urea is stopped and its accumulation in the arterial alters the cerebral functions. In the late stage, low platelet count makes the health from mild to severe deterioration. At this stage, patients experience the psychological stress, personal concerns, social stigma, devastating symptoms like bleeding in the skin, renal syndrome, shortness of breath, jaundice, swelling of legs, intense itching, vomiting blood, weight loss, fatigue, coma and memory loss. Multi-organ failure because of poor immunity and death occur in more than half of the cases.