I'm really sad and searching for answers...

[seeyasia]

I found this forum while searching for answers. First off, thank you. I couldn't find a support group that would give me any answers on social media. So this board is great!

My mother, Rhonda is 60 years old. She was diagnosed in December of 2013. She started the transplant in May and things were looking up. I returned home to Colorado and looking forward to her possibly visiting this year. My husband and I recently moved back to our hometown to take care of her and of course be much closer to family.

But she isn't doing too great and I don't know what's going to happen.
She doesn't eat much of anything because of her taste buds being out of wack. She stopped taking her medicine because of her esophagus and she is now receiving TPN to help with the weight lost, but it hasn't been working lately. She is only 82 pounds and she told me tonight that she is going to die.

I really don't know what to do for her. She is refusing to go to the doctor because her last visit resulted in a lot of waiting around for tests that didn't occur when she wanted it to. Mind you, my mother has always been pretty combative. Especially in hospital settings.

Is any of this normal? How can we fight this? I am so lost. I know she wants to fight, but it seems so hard.

[DanL]

Sia,

I am sorry to hear about your sister's struggles. I am not sure who she is working with, but I am working with what I consider some of the best doctors in the country at CBCI in Denver at Presbyterian St. Lukes. I am coming up on 2 years of post-transplant life and have had good days and bad days, and spent almost 100 days in the hospital, not including clinic last year. My will to see the doctor has become weak at times and I have actually missed appointments for the first time over the past 3 months. I take all of my medications and try to eat whenever i can - so my fridge and freezer are now filled with a combination of junk food and good food - just whatever sounds good at the time. I do most of my own caregiving in spite of my wife and kids being present. I can tell you that they are my reason for living and pushing forward, so when one of them asks me if I want anything to eat or drink, i always say yes - this way they feel valued, and I feel like i am doing what I need to do.

A few weeks ago, it became apparent to me that I was not doing a good enough job of caring for myself - I am 6 ft tall and have dropped from 172 pounds to a low of 148 since December - but it took the doctor and one of my favorite nurses to look at me and say that I looked to thin. They then shared with me something that I did not know - and I am a know it all if there ever was one --- graft versus host disease used to be called chronic wasting disease. This really woke me up - the thought of wasting away is really disgusting to me, where the concept of struggling with GVHD just sounds like I am sick and that i just need to deal with it . The excuses are over - I cannot lose weight, I cannot waste away. ... I am only doing my job if I am eating well and making sure that my family does as well - so I have made sure that any of my energy goes toward making food that my family and I can enjoy together at the dinner table - I am up 5 pounds in two weeks - some of it due to just eating, some of it to accepting steroids again, despite my troubled history with them. (I have avasular necrosis- a bone and cartilage degenerative disease in my hips, knees and shoulder) I realized that I was paying lip service to needing to live, but not taking the right actions or accepting the help that I have around me, which is sometimes a shameful kick in the butt knock on the door from my father-in-law waiting to pick me up and take me to the appointment that I am fully capable of delivering myself to, but just don't want to too many days - I am borrowing his motivation and self interest

One of the mistakes that people with chronic diseases like this one have is that we want to hide the disease from our friends and families, we want to be left alone, we have been poked and prodded enough and not always getting better - in fact sometimes worse, and we don't want to be a burden. In so many ways we become inward focused, selfish, and blind to the impact of our actions. It leaves our friends and relatives powerless, concerned, and sometimes disinterested. Don't lose hope in your sister, show your interest, give her the unwelcomed kick in the butt and show her that life is worth living. She knows that it is, but may need a reminder- sometimes daily, sometimes weekly - it may start with a warm bath, a movie, good food, a good laugh......don't give up on her, dont let her think that it is acceptable behavior. She most likely has the tools available to her to beat the disease. She may also need psych help. I have tried the go it alone tough guy - and i have at times needed even 1/2 hour with the counselor to get over myself and realize that I was wrong headed......Just because I can get it done does not mean that I should be the only one fighting the fight.

Good luck to you, your sister, and your family. I definitely feel your pain and understand your sister at the exact same time. These boards are my therapy some days. I hope that they help others when I post experiences that I never would have shared 5 years ago because I am a private person.

Dan

[PaulS]

Hi Sia - I'm not as far along as you mother post transplant but I can understand how she might be frustrated and depressed. It sounds like she's dealing with significant GVHD - which requires the attention of someone who know's how to treat that condition -I was (and still am)treated with prednisone - a nasty drug - and Rituxin - which worked small miracles - in mostly clearing up my GVHD - but I'm still dealing with it and hoping it will eventually go away. There are many options for treating GVHD but not taking anything sounds like a bad way to go. Maybe find a different local doctor - sounds like there is a good transplant center in Denver - and help her get things under control. Maybe a brief stay in the hospital to figure things out and get medications corrected. If what she was taking wasn't working then she may need to find something else.

If you can help motivate her and maybe take her places where she needs to go - that might go a long way, but ultimately she needs to find the inner strength to keep fighting.. Its great that you are nearby - the love of a daughter is a powerful thing!

Best wishes,
Paul

[rar]

I had a transplant 18+ months ago. All went well for 3 months when I got c.diff, cmv, and GVHD. I was in the hospital with one foot in the grave with the other on a banana peel. I could not eat for the 2 months and went from 170 to 130, mostly muscle loss. After 2 months I was sent home on TPN. I slowly recovered and in a few months could walk 5 miles. At year 1 I got a bad case of GVHD and was treated at home. They increased my prednisone slowly up to 120 mg. a day. GVHD improved. Over the past 5 months I have tapered down to 5 mg. and a lot of the prednisone side effects have improved. I am down to 20 pills a day. I can walk 5 miles again.

The human body is pretty tough if you give it a chance. Listen to the doctors and take the advice which makes sense. Feel free to question them. They are not always right. I have had a lot of doctor visits (550 medicare claims in the past 2 years). Recently in one week I had 7 scheduled appointments. I thought enough is enough and fired 4 of my doctors. I am now down to about 2 a week.

BCBI is a very good transplant center. I almost choose it, but I ended up using University of Colorado. Both are very good choices.

You probably know your mother better than some of the doctors. Do what is best for your mother. At 60 she is still young. I am 75. I wish you both well.

Ray

[riccd2001]

Originally Posted by seeyasia

But she isn't doing too great and I don't know what's going to happen. She doesn't eat much of anything because of her taste buds being out of wack. She stopped taking her medicine because of her esophagus and she is now receiving TPN to help with the weight lost, but it hasn't been working lately. She is only 82 pounds and she told me tonight that she is going to die.

Over the years of various treatments for my low-risk MDS and now AML, I have had lack-of-taste problems. For me, OTC Zinc Citrate (50mg) with a meal has helped me to resolve my taste/eating problems fairly quickly.

YMMV but it may help your mom's appetite.

[Neil Cuadra]

Sia,

It's tough when family members are doing their best to help and the patient isn't fighting for herself, or being cooperative with doctors and family. You aren't alone, because I've heard about this problem from other caregivers, but that doesn't make it any easier for you.

Taste buds can improve over time, but your mother needs proper nutrition right now. You might find useful tips on the web (here's an example). I'm surprised that TPN doesn't keep her weight up. My wife had TPN after her transplant, and it was essentially the liquid form of eating a proper diet. But maybe that's not the same as what your mother is getting. Has the doctor explained what's going on? Has your mother been vomiting?

There can be many reasons for actions and attitudes like your mother's. Every transplant case is different and every family's interpersonal relations are different. Some parents can't adjust to the reversal of roles when their children are taking care of them. Some can't get past their symptoms to imagine their own improvement. Some are depressed. Some have bad hospital or doctor experiences and give up rather than stand up for themselves. Some feel guilty for putting the family through their illness, and don't know how to express it. I'm a l layperson, not a psychologist, but I know that factors like these can play into the problem.

Perhaps saying the right things to your mother could get her to be more cooperative, but you may need some outside help. The hospital may have counselors, social service workers, ombudsmen, or other people who help with these types of problems. It may be wise to tell your mother's doctor what you've told us, so he/she doesn't think the treatment is progressing smoothly. Also, there are independent professionals who understand how to help families coping with major illnesses. Perhaps you can get a referral. Professionals who "have seen it all" are most likely to have strategies and advice to offer. After all, it's not surprising that you feel lost about what to do, since you've never faced something like this before. Seeking help for your mother shows how much you care.


P.S. to DanL: The patient is Sia's mother, not her sister.

[rar]

I don't think I would call TPN a proper diet. Mine was 285 grams Dextrose, 116 gm. Amino Acid, 50 gm INTRALIPID, electrolytes and vitamins. I got 2 liters a day. I was told that it would keep me alive, at best I might maintain my weight. I kept alive and didn't lose too much more weight.

Ray