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Posted 8/11/2005 7:49 PM (GMT 0)
Does anyone have problems with, I don't know how else to put it, 'hot feet'?

Mark can't stand to have his feet covered at night, because when they get too warm the pain gets that much worse.

I was just curious.

God Bless.

Posted 8/11/2005 7:55 PM (GMT 0)
What anti-rejection drug is he on? I get hot feet sometimes in bed, and I think it is because of the Prograf. Does he ever get tingling in his toes or sensitivity to heat in his toes or fingers? The first few days after my transplant I had to have bare feet all the time, so I don't know if this could be the same thing.
Posted 8/11/2005 8:06 PM (GMT 0)

Makes sense that it could be from the meds.  I never noticed that in the literature.  Though, I've read so much on his meds I can't remember it all.

He can't stand to have shoes or socks on, either, and it's been over a year.

I really don't notice any issues with his fingers.  It's just keeping his feet uncovered at night.  He has horrible pain in his ankles, too. But, there were some nerve issues from the edema prior to transplant.

And, now, we're finding out that he's got arthritis in his spine. So, there is always the possiblity that that's what causes the ankle pain.

How are you doing today?

Posted 8/11/2005 8:48 PM (GMT 0)
There's so many possible side-effects, it's impossible to keep track! Sometimes when I tell my doctors about stuff they just shrug and say it probably is a side effect but they've never heard of it before. I have had pain in my ankles - kind of where my heel meets my ankle really. It was far worse when I had been walking a lot, though it never really stopped me from walking. I havent had it for a couple of weeks now though.
I guess it could be so many things with the complications of nerve damage and arthritis.
I'm doing OK today. I have my ups and downs, and sometimes I feel I can't cope, but I know that I'll always get myself through it and be fine in the end.

By the way, try not to read those side-effects - when I read the leaflet that came with the prograf I cried for hours, but I've never had most of them and have had some that aren't even on there! They're just statistics at the end of the day and don't neccessarily apply to individuals.
Posted 8/11/2005 9:13 PM (GMT 0)
We've been at this liver disease thing for over 2 years now, so I've read a lot.  Sometimes the doctors don't appreciate it, at all.

I don't usually take anything too seriously unless Mark is actually having symptoms and I'm on a hunt for possible causes.

When he started the HCV treatment, we were given a lengthy list of possible side effects. It scared the daylights out of me.  Especially, the idea of violent mood swings.  Over time, it turns out that he has more problems with the Nexium than he does with the interferon.  Of course, as you know, that changes from day to day.

I'm glad to hear that you're having a good day.  Keep your chin up.  It's bound to get easier.

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