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Got hit again...

slg
Posts: 200
Joined: Jan 2010

We have been to hell and back is my saying these days.

We have had so many ups and downs in the last two years it is truly a wonder that we are still here and somewhat sane.. I think anyway.
After being told no transplant then yes transplant, then no again then treatment for the past year to get back into criteria we were told no again. We ended up going to see an Oncologist. he said maybe a clinical trial if the Billirubin gets down to 3 or below!! Billirubin is 4. as of last week. then today while at the Onc. appt again he said that the Billirubin needed to be 2 or below!!! Of course I questioned that and he claims that because of the ascites it would need to be that low. He then suggests Hospice!! I was so shocked and disappointed I couldn't even talk because of the tears.
We get home a few hours later and I get a call from the visiting nurse telling me that the Dr. contacted her company and ordered Hospice!! We had told him that we wanted to talk to the visiting nurse about hospice and then decide when the right time would be. After talking to the nurse we get a call from Hospice! So they are coming tomorrow just for an informational visit right now.
Anyone have any info on this subject and what I might need to be asking? I am trying to keep it together but it is getting harder by the minute..

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

What a traumatic day for all of you! It sounds like the oncologist acted decisively, which is good though it hurts. We have had hospice for six weeks, and it has made a huge difference in Mom’s quality of life. Every two or three days we have a new symptom that needs comfort care (this week it’s itching caused by liver dysfunction), and our nurse is only a phone call away. She always changes her schedule and comes by if it can’t wait until tomorrow. It is so good to have so much knowledge and experience – Nurse Debby has worked hospice off and on for 20 years. But even the intake nurse was helpful and ready to start solving problems that day. Hospice can be a very good thing indeed.

Don't worry about asking the right questions. You'll have new ones every day, and access to medical folks who will give you straight answers.

slg
Posts: 200
Joined: Jan 2010

Thank you, Barbara53. My husband has had an increase of itching which I assume is also from the liver disease. What did you do for your Mom's itching? He has been spraying Benedryl spray on the inchy parts but I'm sure there are other remedies. he doesn't like taking Benedryl pills though. Makes him too sleepy and upsets his stomach.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Yes, the itching is terrible. Our nurse said to choose between internal or external drugs, recommended taking the internal route and using Aveeno lotion rather than cortisone creams. Mom started on a prescription-strength benedryl-like drug today (hydroxyzine hcl 25 mg) which is also supposed to cause sleepiness. Mom says sleeping is better than itching.

We tried rubbing alcohol with no response, but I think there is some relief using Clinique clarifying lotion (or witch hazel). I also had a neighbor bring a fresh tube of aloe gel from CVS and I’m putting that on places where the skin is getting raw. The other night as a last-ditch effort to kill the itch my daughter suggested Vicks vapo rub, and I swear the menthol worked great, long enough for the pills to kick in so mom could get some rest.

The itching typically associated with liver issues involves the back, torso, thighs more than other body parts according to our nurse feelbetter. Do these pieces fit for you?

slg
Posts: 200
Joined: Jan 2010

Thanks. Every little bit helps.

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