Monday, September 8, 2008

The missing piece

Hey everybody -

Tom is doing well. He is becoming more and more stable on his feet every day. We have a physical therapist who comes to our house once per week to teach him helpful methods in walking heel first, taking larger steps (this is all using a cane), doing stretching exercises, walking around the house, etc. He's usually worn out when I get home on those days.

He requests his favorite meals but can't seem to eat much of it. He says it smells so good and looks delicious but after a few bites he can't eat any more. Everything has a funny taste - sort of metallic. He's eating enough to sustain himself though.

He's been very depressed lately. He can't stand it any longer. He is on a mission to discontinue his antibiotics, with the doctor's approval. He wants to remain on the medicine that all stem cell transplant patients take (it's called Cellcept) but wants to do away with the remainder. There are four antibiotics: one antiviral, two antibacterials, and one antifungal. He feels like it's too much and most likely the cause of his ongoing ill health. He's to that desperate point of taking the risk of discontinuing the antibiotics - making him more suceptible to germs - in exchange for feeling good and possibly putting him on a different path to "normalcy". He didn't take his medicine for two days and felt so much better than usual. It has to be hard to take pills knowing how much better he feels without them. It's doesn't make any sense.

This whole situation is like the last piece in a puzzle, that won't seem to fit no matter how we turn it and push it. Are we doing something wrong? We can't see the end result until we find the piece that fits.

4 comments:

wiizii said...

Lisa, Tom,
I don't think you are doing anything wrong. You are not doctors, but your proactive participation in Tom's medical care is important. Doctors don't know everything and doctors don't always think "out of the box" when they should. Your persistence will pay off I'm sure. I've been all over the internet trying to learn anything I can. I've been doing plenty of emailing and maybe I'll get an answer. Who knows??? Just keep chuggin' along and celebrate every step forward, no matter how small. Tom needs to
"simmer down now" and enjoy his tremendous progress!! I gotta run. Ya'll behave now.
Hugs,
Elise

Richard said...

Just my opinion, but I think Tom should discontinue one medication at a time, then add that one back and discontinue another one and see if there is one particular pill that is ruining all the rest. If he discontinues all his antibiotics he runs the risk of infection and right now he doesn't need any cooties in his life.
So, if he can stand it, he should start losing just the one antibiotic he suspects the most and see how that goes. It's easy for me to say since I am not having to take the medications myself, I am just suggesting a scientific approach . . . in troubleshooting a computer I learned to keep everything the same but uninstall one program or stop one service and see if that works. If it doesn't, I start that service back up and stop the next one I suspect.
Troubleshooting people is a bit more scary because we don't necessarily have a "system restore" button. But stopping all the medications at once could be a shock to Tom's system.

I'm no doctor, and I don't really trust doctors, but I know what worked for me.

Tom's depression could very well be a drug interaction and of course his current circumstances. He is very lucky to have you, Lisa, and Katie to help him through this. Get better, Tom!
Where's a good faith healer when you need one?

Anonymous said...

-Where there is pain, I wish you peace and mercy.

-Where there is self-doubting, I wish you a renewed confidence in your ability to work through it.

-Where there is tiredness, or exhaustion, I wish you understanding, patience, and renewed strength.

-Where there is fear, I wish you love, and courage.

Chris - 9of 9 said...

Keep on truckin'!

I'm not an advocate to go against "Doctor's order's" but at the same time, I don't follow mine either.

I say go for what makes you comfortable and seek out an herbalist for the rest of it.

Love ya,
Chris