Good morning from Madame DuBois...

madubois63 · 05-26-2008, 05:32 AM

So on my last update, my liver function had gotten better without any treatment, but the big drop happened after I was pre-medicated for 2 days with prednisone for my allergy to CAT scan dye. My bilirubin had dropped from 9 to 2. The doc canceled the liver biopsy and I felt like my care had been dropped. I had also caught that miserable upper respiratory infection, so that kind of put things on hold too. Anyway...the bilirubin climbed again - last call it was at 10. So last week, I had a liver biopsy (no results yet) and had my fourth port-a-cath placed. My poor arm is very happy now! On Friday, the leukemia doc said they would admit me to the hospital on tuesday and start very high dose steroids for six days. Has to be IV because pills would ulcerate my stomach.

Okay, so here's my dilema...every time I go in the hospital, I get sicker. CMV will reacivate in my blood. More medications will be added. I'll pick up some funky bacteria as always. They'll add a broad spectum of antifungal and antibacterial...I'll get the stomach problems and won't eat the horrible hospital food or the unindation of take out. One week of supposed treatment for a somewhat healthy me right now will become several weeks of hospital stay that will just make me sicker. If I just take a dose of steroid pills like I was doing a few months ago aat home eating my own food and surrounded by my own life/germs, I believe this will fix the problem and keep me healthier. I want to ask for 7 - 10 days of at home steroids and if it doesn't work, then I am open to a hospital stay.

Any input or thoughts???? Thanks everyone!!!!!

Becky · 05-26-2008, 05:39 AM

What about a visiting nurse and still get the IV steroids that way?

dhealey · 05-26-2008, 06:08 AM

I would go for your plan, nobody knows your body better than you do. I like Becky's idea also with a home health nurse. Good luck.

IRENE FROM TAMPA · 05-26-2008, 06:44 AM

Madame -

but the stay home idea with a nurse sounds much better then in hospital if you dont have to.

Good luck honey and get better.

Yorkiegirl · 05-26-2008, 06:45 AM

AWWWW Mary Ann if it's not one thing it's another. I agree I like your plan as well. I also agree with Becky that maybe a visiting a nurse to give you the IV steriods.

madubois63 · 05-26-2008, 07:39 AM

The home nurse is a great idea except my insurance does not cover it. Had this problem after the transplant. I can give the IV steroids to myself (expert at the pump), but it's twice a day (every 12 hours), and I know they wouldn't go for it. They are talking huge amounts of steroids, but I had a dramatic drop after a day of a small dose of pill form prednisone. I was on 140 mg over the fall/winter (cleaned everything) and did fine with that. I just know the hospital will make me sicker. I figure after 5 weeks of them not doing anything, why not try my way first (less evasive and safer for me). If it doesn't work, then I go thier way????

PinkGirl · 05-26-2008, 08:46 AM

Hi Madame
I don't know very much about this but .... I once had IV anti-biotics
this way - went to the hospital at 7 am and went back at 7 pm. Is
this possible or is the infusion time really long?

I also want to apologize for misspelling your last name. I didn't know
that it is with a "capital B".

Good luck with these decisions Madame DuBois. I know you will get it all worked out - you always do!

hutchibk · 05-26-2008, 10:21 AM

Go with your gut, Marianne! Stay at home. Get a home nurse, that is a great idea. Tell the docs you want to do it your way first and if that doesn't work, then convince them you want a quarantined room!! Stay well.

ElaineM · 05-26-2008, 11:32 AM

Hi,
A visiting nurse or home health aide sounds like your best choice. Nobody wants to get sicker in the hospital.
Is there another nearby facility you can go to instead of the hospital that causes you more problems.
Good luck. I hope you get better.

Bill · 05-26-2008, 01:03 PM

Hi Madame DuBois! It's good to hear from you. I'm sorry about the trouble you've been having. It sounds to me like you have a good plan. You do know your own body better than anyone else, and eating your own food is so much healthier for you.

Mary Anne in TX · 05-26-2008, 01:39 PM

Can they do it at the treatment center where you always got chemo?

harrie · 05-26-2008, 11:12 PM

Maryann,
Instead of being admitted into the hospital for the IV treatment, would it be possible to have it administered at your oncology center as an out-pt?
Maryanne

harrie · 05-26-2008, 11:15 PM

OOOppps, I just noticed Mary Anne in TX just said the same thing as me...
Us Maryannes must all think alike.....
High 5's for all the Maryannes and that means you too ms madubois63!!!
Take care Princess.....

Joan M · 05-27-2008, 05:42 AM

Maryanne,

Of course staying at home would be the best option but getting someone to come in is a dilemma.

Can you talk to a social worker where you have chemo? Someone on the oncology side? They can sometimes direct you to the right resource and help to make arrangements.

We have this at the Nalitt, which is part of North Shore LIJ. I know from other bc patients that the social worker there has helped them in different situations.

Joan

madubois63 · 05-27-2008, 07:53 AM

Thanks for all the input. I am going to try and clarify a few details and maybe you can get a clearer picture. I CAN'T have a visiting nurse come in. My insurance does not pay for it. The IV steroids would be given 12 hours apart twice a day. They wouldn't do this at my cancer center where I get all other treatments because of time constraints. They are not going to open up just for me. They'd rather have me in the hospital so that they can test for anti fungal, anti virus and anti bacterial critters that you KNOW I'm going to pick up once I step foot in that place. Because of the transplant, my rooms are ALWAYS private. The problem is the cleaning crew. Next time your in or visiting, watch...see how many times they change their gloves after scrubbing the toilet and the shower. Then watch every light switch and door knob they touch before they come in with the bucket of "clean water" and scrub your floor. As soon as they leave, I put a mask on, put new gloves and clean my own room. Then I refuse them from entering my room for several days. I change my own sheets and pray. I always end up sicker there. Its a fact! I just don't feel like going in the hospital today!!! I haven't got a call yet, so I guess I'll be the brave one and make the call....I'll keep you informed.
Thanks again!!!

Ruth · 05-27-2008, 07:56 AM

Maryann,

I feel that you know your body better than anyone else however I feel that the concern about the amount of liver bilirubin elevation is concerning to your Dr.'s...and they want to take care of this because this exists now versus what can happen later...ya know? Few doctors are known to take a proactive stance on future complications...they want to take care of what exists right now and treat that. I wish they could send someone to your house! I can see their point and yours. I know whatever you decide you will be strong as you always are.

Take care ~ Ruth

Ruth · 05-27-2008, 07:58 AM

OK...no more wishing someone can come to your house! :-)

abitjaded · 05-27-2008, 10:00 AM

Maryann,

How long does it take to administer the steroids? Over how many days? How many blood draws?

My mom had years of home health care. To pay an RN it is $20 hour and up. (CNA and LPN are cheaper) An RN could do the IV and blood draws from port or whatever. Parse out the cost and see if it is doable. Contact the Onc Social Worker and see if there is one of the chemo nurses or someone who does private duty.

Go to the top of your Insurance pecking order. Surely someone would recognize the fact that they could save money! Ha, just wishful thinking.

Do you have any angel friends who could mop down the room for you?

Have you had big dose steroids before? Made me batty. I would not want to be alone on them.

Carla

madubois63 · 05-27-2008, 10:37 AM

The six days and nights of continuous steroids are now off the table - thank God, as is the hospital stay. The liver biopsy came back with mixed results. There is a small amount of graft versus host disease (which i have been saying for five weeks) and a build up of iron (from too many blood transfusions - over 50). Tomorrow, I am scheduled to go to the clinic an have a pint of blood removed and I'll receive a shot of epogen to help move the other trapped iron in my system around. I will also start high dose steroids (pill form taken at home) YEAH!!! I will have to start to watch my sugar levels again and take insulin if necessary. Small price to pay for being healthy. I will get to my daughter's award ceremony tomorrow night and when she gets inducted into the Natl Honor Society next week - I am happy!! I'll keep you informed as to how it's going. I am very happy I spoke up and got a bit of a compromise!!! I feel much better about this treatment...

abitjaded · 05-27-2008, 10:46 AM

Oh, yeah!!!!!

How old is your daughter?

I have two boys, 11 and 14. Never got into Nat'l Honor Society. But there is still hope.

Carla