Very swollen legs and abdomen - any idea?

[BeansMama]

Hunter, I am so sorry at everything your brother - and by extension your family are going through.

I wish he would go to the ER to get some relief but on the other hand I totally understand why he does not want to go.

I will continue to keep your brother and your family in my prayers, I hope he finds at the very least comfort soon.

[thehunter]

Thank you everybody. Your prayers , thoughts and advice are very welcome.

[surfingon]

So sad to hear that many doctors still do not understand the possible causes of this kind of swelling. Sent you a PM.

May your brother be free from suffering,
Rachel

[thehunter]

Hi Rachael
Thanks for posting. I didn't get a PM - could you resend?
An update : my brother has been admitted to hospital and they say it is not Ascities but to do with liver failure. He is now on pain relief at least.

[aja1121]

I am so grateful they are able to address your brother's pain. My thoughts remain with both of you.

[mypinkheaven]

An update : my brother has been admitted to hospital and they say it is not Ascities but to do with liver failure. He is now on pain relief at least.

I know your brother doesn't want to be in the hospital, but I'm so glad he's getting some pain relief.

[surfingon]

That PM I sent yesterday has completely disappeared. Complete mystery.

Clearly much has transpired since yesterday, so the info I sent is probably less helpful now. My conjecture was that his swelling may have been caused by a tumor/tumors blocking his portal vein in his liver. My husband's interventional radiologist was pretty sure this was the cause in his case, but he was also very clear that any imaging to verify would kill my husband. Even knowing that, none of his doctors had a clue as to what to do to relieve the swelling. Years later, I stumbled on an answer, which I wrote about in this blog post:
https://sheddinglightonthecancerjourney.wordpress.com/2011/11/04/attention-cancer-patients-with-swollen-legs/

However, your brother is apparently now on a trajectory similar to my late husband's: liver failure. Glad to hear he's on pain control, but still strongly suggest that a palliative care team be on board to cover that, as our experience is that my husband's oncologist and even his surgeon were woefully uneducated about the arsenal of possibilities in the toolbox of a pain control specialist. A dear friend who has been a hospice nurse for 25 years and was trained in advanced pain control at Memorial Sloan Kettering says that most doctors know next to nothing about pain control.

What may be helpful for you to know now (and which should be common knowledge for a good palliative care doc) is that one of the possible side effects of liver failure could be delirium and ultimately coma. This is very different from any delirium that might be caused by poorly-chosen or administered pain control drugs. Perhaps your brother may be like my husband in that he places a high value on clarity at the end of his life. I can say for sure that most family members would want that for their loved one, as it opens the possibility for really meaningful conversation at the end of life, a door that would otherwise be closed due to delirium or coma.

If that eventuality occurs, there is a simple and inexpensive, easy-to-administer potential solution. It is called lactulose. It's not a cure, but it works fast to clear the build-up of ammonia which is ultimately the cause of delirium due to liver failure. For my husband, the results were a dramatic cure for episodes of craziness caused by the ammonia-- and a dose reversed the symptoms in less than 30 minutes.

Hope that this is helpful. I'd be happy to answer any other questions you may have. There's a lot in my blog about pain control and other issues you may be facing...

Sending prayers for peace and freedom from pain for your brother and your family,
Rachel

[midlifemom]

That PM I sent yesterday has completely disappeared. Complete mystery.

Clearly much has transpired since yesterday, so the info I sent is probably less helpful now. My conjecture was that his swelling may have been caused by a tumor/tumors blocking his portal vein in his liver. My husband's interventional radiologist was pretty sure this was the cause in his case, but he was also very clear that any imaging to verify would kill my husband. Even knowing that, none of his doctors had a clue as to what to do to relieve the swelling. Years later, I stumbled on an answer, which I wrote about in this blog post:
https://sheddinglightonthecancerjourney.wordpress.com/2011/11/04/attention-cancer-patients-with-swollen-legs/

However, your brother is apparently now on a trajectory similar to my late husband's: liver failure. Glad to hear he's on pain control, but still strongly suggest that a palliative care team be on board to cover that, as our experience is that my husband's oncologist and even his surgeon were woefully uneducated about the arsenal of possibilities in the toolbox of a pain control specialist. A dear friend who has been a hospice nurse for 25 years and was trained in advanced pain control at Memorial Sloan Kettering says that most doctors know next to nothing about pain control.

What may be helpful for you to know now (and which should be common knowledge for a good palliative care doc) is that one of the possible side effects of liver failure could be delirium and ultimately coma. This is very different from any delirium that might be caused by poorly-chosen or administered pain control drugs. Perhaps your brother may be like my husband in that he places a high value on clarity at the end of his life. I can say for sure that most family members would want that for their loved one, as it opens the possibility for really meaningful conversation at the end of life, a door that would otherwise be closed due to delirium or coma.

If that eventuality occurs, there is a simple and inexpensive, easy-to-administer potential solution. It is called lactulose. It's not a cure, but it works fast to clear the build-up of ammonia which is ultimately the cause of delirium due to liver failure. For my husband, the results were a dramatic cure for episodes of craziness caused by the ammonia-- and a dose reversed the symptoms in less than 30 minutes.

Hope that this is helpful. I'd be happy to answer any other questions you may have. There's a lot in my blog about pain control and other issues you may be facing...

Sending prayers for peace and freedom from pain for your brother and your family,
Rachel

Rachel,
Thanks for the informative text, as any of us could head down the liver failure path.
Why would the lactulose not be given on a frequent basis, instead of what sounds to being given on occasional/emergency/situation specific (can't find the right word here) time?

[CRguy]

quickie reply if that's OK ?

too much lactulose will produce major diarrhea and fluid loss
we use it in chronically obstructed / obstipated older felines ..... BUTT its dose and use must be monitored closely
or it can induce kidney failure in "fragile" patients

It works well to "feed" the good gut bugs which detoxify the GIT and blood wastes ...
ergo HELPS with detoxification where hepatic insufficiency and toxicity are involved.

ALWAYS a balance between GOOD effects and "side" effects

HTH ?
...and a huge THANK YOU to Rachel for continuing to be a part of our community here
you are the best my friend.

Harmony
CR

[Lee]

HTH ?
...and a huge THANK YOU to Rachel for continuing to be a part of our community here
you are the best my friend.

Harmony
CR

Could not agree more, thank you surfingon (and you too CRguy) for all that you contribute.

Hunter, I hope and pray your brother is pain free and with his family,

Lee

[Pita]

Prayers and hugs for your brother Hunter...