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jackie
Member
Username: Jackie
Post Number: 6
Registered: 05-2012
| | Posted on Friday, June 15, 2012 - 02:47 pm: | 
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I need some encouragement. My husband is 3 months post liver tx. He cannot eat. Says everything "tastes like medicine" Our coordinator says some people complain about this the first 2 months post tx, but not this long or this severe. He is loosing weight and hope. Kind of depressing around here. Does anyone have any suggestions?
jackie, caregiver
HCC, liver transplant 3/14/2012
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Joe Berry
Forum Leader
Username: Joe910
Post Number: 322
Registered: 08-2008
| | Posted on Friday, June 15, 2012 - 06:39 pm: |
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I can't speak to not eating, but I can talk about the time frames that are given. I had fatigue after liver transplant and was told it would go away in six months. It didn't. The doctor then told me if I had it after a year, that there was almost no hope for change. At about 15 months, my fatigue left. That was in 2008. It has never come back.
I hope your husband's taste returns to normal. Have the doctor's made any mention of which meds may be causing the issue?
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jackie
Member
Username: Jackie
Post Number: 7
Registered: 05-2012
| | Posted on Friday, June 15, 2012 - 10:33 pm: |
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Thanks for your info. The nurse coordinator said prograf might be causing the problem, but we can't get off that one. I have found out that Vitamin D and Ursodiol can cause a metallic taste. I plan to talk to the transplant pharmacist and ask them to research the meds he is on.
jackie, caregiver
HCC, liver transplant 3/14/2012
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Joe Berry
Forum Leader
Username: Joe910
Post Number: 323
Registered: 08-2008
| | Posted on Saturday, June 16, 2012 - 09:28 am: |
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I take prograf and vitamin D now and did take Ursodiol prior to transplant. I would vote on the ursodiol. While everyone's body chemistry is different, the ursodiol sometimes caused my taste buds to change. When I went on it there were foods that I used to really enjoy that no longer tasted the same. I thought it was the disease - maybe it was the Urso. There are several manufacturer's of Urso - two brand names Urso and Actigal and several generics. It may be worth considering a change there. Each manufacturer uses a different binder/filler and that may be the cause.
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Bob2006
Member
Username: Delgador
Post Number: 253
Registered: 06-2008
| | Posted on Sunday, June 17, 2012 - 01:50 pm: |
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Hang in there, although it is not easy.
He is alive and I promise you that he will get better. Joe is right about time frames every one is different.
Post tx I didn't eat for many reason, taste, food smell, I would feel full after 1 bite, I would vomit, and all foods had a metallic salty taste. In the process I lost 152 lbs, went down to 192 lbs which was good, this took about 6 months. Eventually I started improving and now I am 6 yrs post tx.
I started taking Urso and vit D in last 2 years so my problem was not due to those meds.
Little by little he will improve,
Best wishes
Bob
Liver TX 7/31/2006 due to HCC
Dr. Jang Moon & Dr. Andreas Tzakis - UM/JMH |
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ono
Member
Username: Ono
Post Number: 168
Registered: 06-2009
| | Posted on Sunday, June 17, 2012 - 05:26 pm: |
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Although I never had this problem, ( I wasn't on urso) it sounds med related and it does take a considerable amount of time to heal.
Try making him healthy smoothies. Use fruit, yogurt and add flax seed meal to help add weight. You can put whole raw eggs in too.
Another very nutritious way to feed him is to boil a whole chicken. After it's cooked, remove the chicken. Add every kind of vegetable you can find. Simmer for at least an hour. Strain and serve him the broth.
My husband made this for me right after my transplant, before I could eat solids.
One more somewhat odd thought that might work, have him try to eat while holding his nose. Smell and taste are closely related.
Good luck~ |
jackie
Member
Username: Jackie
Post Number: 8
Registered: 05-2012
| | Posted on Monday, June 18, 2012 - 08:48 am: |
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I want to thank everyone for their suggestions and words of encouragement. I love this site and the kindness all of you express is wonderful. My husband does feel a bit better. I spoke with the tx pharmacist yesterday and he said we might be able to stop 2 more meds. I think much of this is drug related also. We have a clinic appt. in 3 days.
Ono, did you use any special raw eggs? The dietitian told us to only eat cooked eggs.
jackie, caregiver
HCC, liver transplant 3/14/2012
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Bob2006
Member
Username: Delgador
Post Number: 254
Registered: 06-2008
| | Posted on Monday, June 18, 2012 - 09:36 am: |
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Raw eggs are a no-no for tx patients b/c of the potential for salmonella infection.
If an egg is infected with salmonella usually it will be on the shell and it can be passed to the egg through handling, salmonella can rarely be found also inside the egg, but it can happen. Check this:
http://www.ag.ndsu.edu/news/columns/prairie-fare/prairie-fare-are-runny-eggs-safe-to-eat/
Liver TX 7/31/2006 due to HCC
Dr. Jang Moon & Dr. Andreas Tzakis - UM/JMH |
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Bob2006
Member
Username: Delgador
Post Number: 255
Registered: 06-2008
| | Posted on Monday, June 18, 2012 - 09:50 am: |
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Also on eggs:
http://news.discovery.com/human/egg-salmonella-bacteria.html
Liver TX 7/31/2006 due to HCC
Dr. Jang Moon & Dr. Andreas Tzakis - UM/JMH |
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ono
Member
Username: Ono
Post Number: 169
Registered: 06-2009
| | Posted on Monday, June 18, 2012 - 12:28 pm: |
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Sorry about the raw egg suggestion. I didn't eat those after my tp, though I don't recall any dietary restrictions other than grapefruit.
The egg idea was a thought about getting more nutrition into your husband.
What I did eat while still in the hospital was the soup and lots of oatmeal and yoghurt.
Thanks Bob for the correction. |
