Mom at Day +41 and not eating

[amykdb]

Hi everyone-

I am hoping that someone who has had a BMT might have some insight/advise for me. My mom has MDS/AML and had a BMT in August. She is 65 years old, and prior to being diagnosed with MDS in March 2009, was in very good health. She has always been thin, but lost weight prior to and after the transplant. She started out at about 130 lbs and is down to about 85 lbs; she is 5'5. She says that nothing tastes good and is simply not eating. I can't imagine that she went through aggressive chemo twice and then the BMT to literally starve to death. She said that no matter what she's not going back to the hospital.

Her counts are going up well but she's tired and gets out of breath when just walking a few feet. So now, she is losing all of her muscle tone and is sleeping all of the time.

She met with the doctor today and her doctor is taking the tough love approach. Eat or come back to the hospital (which, remember she says she will not do). At her last appt. I talked with her doctor and had her put on zoloft since I am sure that depression is playing a significant role here.

I just feel helpless. She lives about 2 hours away and I work, etc., so I can't be there to try to get her to eat and my dad is not having any luck.

Does anyone have any advise or a similiar experience?

Thanks,
Amy

[Ruth Cuadra]

Hi, Amy.

Learning to eat again after transplant can indeed be very difficult. I remember how hard it was for me because, as your mother says, nothing tasted good. I lived on popsicles for a while because the coldness kept my sore mouth from hurting. You might be able to help your mother by focusing on hot vs. cold or a texture she is comfortable with rather than how the food tastes and whether or not she's hungry. Right now it's probably more important that she gets calories than a full range of nutrients, so look for calorie-laden foods. Will she drink Ensure? Carnation Instant Breakfast? Either can be served very cold.

I think you're right to ask about antidepressants. There are also appetite stimulants that some patients take after transplant. Ultimately, I knew I had to eat in order to be released from the hospital so I was motivated. If her motivation is to stay out of the hospital but she's still unable to eat, then reviewing the situation with her doctor is the right course.

Hope this helps.

Ruth

[ann]

Amy, it sounds like your mother is in severe depression. I hope your father has a support group to help him. I know that you feel so helpless being so far away but it seems you are doing all you can. I agree tough love can help some people, but not all. The caregiver has to keep nagging her to eat. An ounce or two an hour to get her back to taking in calories might be the way to go.
God bless you and don't give up on her.
My husband was diagnosed with MDS June 30, '09. He is not a BMT candidate but seems to be doing very well on Vidaza.
ann

[Vera W]

Amy, I lost 45 pounds but I had gained weight before I went in. I couldn't even talk about food. Every thing tasted bad, I was throwing up everything. They put me on a steroid that was for your intestinal track, it helped a lot and antivan really helps a lot. it would settle my stomach enough to eat a yogart or take some meds. My husband made me eat, I ate a few bites here and there but it took a good 6 weeks. Hope this helps

[Laura]

Try small frequent meals then they aren't so overwhelming. Maybe she can meet with a dietitian at the hospital who can give her ideas of what to try to eat that are high in calories. I know the Culvers custard is high in calorie and very soothing. If it is indeed depression "causing" this, then first that needs to be treated in order to try and help this. Maybe she can try Reglan (appetite stimulant). What about those nutritional drinks? If she refuses to go into the hospital, maybe they can set up home tube feeds so she doesn't have to go to the hospital?
Good luck.

Laura

[amykdb]

Thank you all for your comments and support. As of yesterday, she was down to 81 lbs. My dad wanted to have her admitted, but her doctor said to hold off. I just don't know how much weight a person can lose without it affecting organ function and general body function.

I am trying to be symapthetic--I get it that nothing tastes good. I really hope that this will start to turn around in the next couple of weeks.

She still has her hickman intact so I am hoping that maybe they can hire a home health nurse to feed her through that? I know they won't want to put in a g tube sinse her platelets are still so low (about 50 at last check).

Vera, Do things taste good to you now? Are you able to walk around without getting winded? Do you have more energy?

Thanks again.

My best to all of you and your loved ones.

Amy

[Laura]

They can do tube feeds through a tube in the nose. It is pretty simple to put in and keep in place. I really hope she starts eating!! Maybe "show" her things that will will her to live so maybe it will make her want to eat???

Just keep trying different foods until you find one that works....cottage cheese, applesauce, ice cream, chocolate milk, nutritional boasts....just keep trying.

[Ruth Cuadra]

Amy,

Patients can be fed through a Hickman during a transplant when they can't eat normally. It's called TPN, for total parenteral nutrition, and it supplies everything needed nutritionally: calories, protein, carbohydrates, fat, vitamins, minerals, and fluid. I had it during my transplant since I couldn't eat for weeks.

TPN can be given at home with proper training but I doubt her doctor would consider that a substitute for regular eating and using her digestive system. You could ask her doctor if it could be considered as a stop-gap measure to avoid re-hospitalization.

Regards,
Ruth

[sandra]

Hi Ruth,

Just to clarify, I thought a Hickman deals only with transfusions/med admin. Don't you need an ADDITIONAL tube inserted in the stomach for TPN feedings?
Or, as another person suggested, a nasal tube that goes in the stomach.

Sandra

[Laura]

You can use a Hickman for TPN feedings along with a PICC line too.

A g-tube is a tube that goes right into the stomach for tube feedings or if it is for short term you can use one that goes through the nose (they pretty much are the same thing just one is through the nose and one goes directly into the stomach.)

Laura