HIV-related atypical cirrhosis?

[moxieinme]

Hello,

My LT partner has been having recent significant health problems due to end-stage liver disease. He had esophageal verices bleeding a decade ago so we have been aware of cirrhosis for some time, but now it has become acute. He recently underwent a TIPS procedure (successful only on the third attempt) but we have been dealing with hepatic encephalopathy. After this week's hospitalization we have changed the focus of his care to comfort care/symptom management, and enrolled in hospice services.

I spoke with the liver specialist yesterday to ask questions. One was what caused the cirrhosis. He wasn't a heavy drinker and although there was a brief period over a decade ago when he was believed to have Hep C, there is no sign of it. Most of his liver chem panels look good, even with the current deterioration. The specialist proposed that the cirrhosis may be HIV-rlated, either the infection itself or past meds, e.g. DDI. My partner has always had very well-controlled VL for over 20 years.The atypical cirrhosis explains my the standard liver chem profiles are misleading, looking better than he actually is.

Does anyone out there have any experience or knowledge of this type of HIV-reated atypical cirrhosis?

Thanks!

[weasel]

       Hello Moxie ,

                             I have no info on   HIV-related atypical cirrhosis .

    Just wanted to send a HUG !    I know this is very rough on you both .

                                                  ((( HUG )))    ,  Carl

[Theyer]

Sorry no particular info Moxie, But many stories off atypical illness. I think because we know so much more now a days we forget that the body throes up surprises. People who never smoke getting lung cancer stuff like that. One off the horrible things is your partner might well off had to deal with liver problems even if HIV was not in the picture.

Anyway lets us know how things go and I hope the hospice is somewhere that you are both comfortable with, and off course I am sorry that your both having to deal with this .
All the best
Michael

[moxieinme]

Thank you so much both of you. Getting support can be just as valuable as information.

I had started to write an update on a thread I had started in January just to give an update with this new turn of events, since it had been a while since I checked in. You were both in that thread, so allow me to give a brief update here.

In January I was bemoaning my LT partner's diagnosis with Parkinsonism and an apparent trend towards dementia. With the latest health crises over these past few weeks it has become clear that much of the issues, including cognitive decline and motor skills problems, have been related to his advanced liver disease. The dementia symptoms are in fact hepatic encephalopathy. It has likely been lurking in the picture for some time and accounts for the (initially) subtle behavioral changes that likewise impacted our relationship. The fears and sadness I expressed in January of a long process and decline into dementia and dementia-care no longer apply as much. He is already a changed person, and his behavior, skills, and needs are already similar to advancing dementia. But with his liver prognosis it's almost certain his time is limited, and the overarching issues are much more focussed.

Also in relation to my previous post, I am committed to my role as caregiver and healthcare advocate. It is, and will be, tough but as I said, likely limited in time span. Although the nature of our relationship has changed, I still care very much for this person who has been in my life over two decades, and it is an honor to assist in quality of life care and assisting with end-of-life issues.

But again, thank you all for the continued support,

JD

[mitch777]

You're a good man there Moxie. My best to you in the coming days.

m.

[Jeff G]

You are in my thoughts . Please take time to care for yourself during this difficult time .

[Theyer]

I am glad you have found a Hospice if they are akin to the one I attend( as Day Patient and I am not dying ) it can be a hugely supportive place to be. I first stayed in the Hospice 10 years ago when I was meant to be dying . Is it near where you live and are there any other folk around for you both? forgive me if I have forgotton.

However much change your dear friend has in his  self there will be somewhere in him that is overjoyed you are there .

I hope the coming weeks contain some quite peace and mad laughter.

[moxieinme]

The hospice services are coordinated by a local organization. Because my area has a large retiree population (it's actually the grey-est county in the grey-est state in the country) there is a well-established and supported medical and healthcare community including a comprehensive home hospice system. I heard they were good, but am discovering what a valuable resource this is and will be. Their services will go a long way to making home life possible and comfortable as things progress.
I have also been overwhelmed but the outpouring of love and support. I'm sorry to say most of that comes to me because I am more active and connected in my community and beyond, and this crisis has revealed what a terrific support system I have available to me. I saddens me, though, because it also reveals the extent to which my partner had isolated himself. Many people, even those locally and who I;ve known for years have not met him. His closest support is me, a small handful of nearby friends, and family a couple states away, but mostly it's me.
Again, I do feel blessed to know so many are caring about me and willing and waiting to help. Knowing I have achieved a long-held goal of connecting to others and making a difference in my county is a real blessing. When it's my time to go, that's better that any monument.

[Theyer]

The hospice services are coordinated by a local organization. Because my area has a large retiree population (it's actually the grey-est county in the grey-est state in the country) there is a well-established and supported medical and healthcare community including a comprehensive home hospice system. I heard they were good, but am discovering what a valuable resource this is and will be. Their services will go a long way to making home life possible and comfortable as things progress.
I have also been overwhelmed but the outpouring of love and support. I'm sorry to say most of that comes to me because I am more active and connected in my community and beyond, and this crisis has revealed what a terrific support system I have available to me. I saddens me, though, because it also reveals the extent to which my partner had isolated himself. Many people, even those locally and who I;ve known for years have not met him. His closest support is me, a small handful of nearby friends, and family a couple states away, but mostly it's me.
Again, I do feel blessed to know so many are caring about me and willing and waiting to help. Knowing I have achieved a long-held goal of connecting to others and making a difference in my county is a real blessing. When it's my time to go, that's better that any monument.

Your partner will also benefit from the support you are experiancing and its good to hear that it is there for you. It is sad to witness others isolation.
Take care
m