NCgirl, I am on my way out for a hair appt., but wanted to welcome you to the forum. I will be back later to comment on your post.
I'm glad you found us.
Post Edited (hep93) : 1/23/2009 3:38:56 PM (GMT-7)
I'm back! It sounds like your dad has really been through the mill. The thing about transplants is that they want a person to be really sick, but not so sick that they won't survive the surgery. It's a fine line and a balancing act.
Has anyone tried to give your dad liquid supplements such as Ensure? Puddings? Milk shakes? Smoothies? Ask his doctor about Periactin. It's an antihistamine, but also used as an appetite stimulant. If he stops eating altogether, it's a clue that his body is starting to shut down. Look also for scant urine output and very concentrated urine. The kidneys shut down before one dies.
You do have your hands full with a 16-month-old! I wish I had some of his energy.
I hope these tips have been of some help to you. We are all here to give you support, so feel free to vent at any time. I hope you will also find some useful information on this forum.
Thank you all so much. It is amazing how much weight is lifted off of your body when you find other compassionate people that can relate to your world.
It's funny, b/c just a year ago I was counting our blessings, and so thankful that my immediate family had not yet experienced any major health problems. WOW....when it rains it pours. This disease is so ugly. I am still in shock at how fast everything has happened. Over thanksgiving, my dad was sitting with us eating turkey, and even making us drinks! I thought, "this isn't so bad...look how strong he is." And then BAM....overnight he became a full invalid.
hep- He is drinking anywhere from 1-2 Ensures a day....we make milkshakes with them. But, it is a total battle to get him to drink them. One of his drs said that if we could get him to drink 3 a day we would be doing him a big favor. He says everything tastes terrible and it seems like he has a hard time getting anything down. I will tell mom/drs about periactin....that is extremely helpful...thank you. While he was in the hospital, his kidneys began to fail...they took him off the lasix and aldactone for a few days, and he improved. Like you said, everything is a balancing act. On again, off again. I just got off the phone with my mother, and she said the hallucinations have stopped for the most part....we are hoping they were from the appetite stimulas pills, which they took him off of. Thank you so much for your sweet welcome. I am glad to be here with you, though I wish I didnt have to be.
As for useful information in this forum....OH YES! I have learned more here than anywhere on the web. I have skimmed all 45 pages of this forum, and seen how differently this disease affects people....but the common thread seems to be hardship for all. That is so sad.
Pink- I know my mother would love to hear some of your wisdom. I have told her about this forum, but she is such a stoic, private person, I am not sure she will check it out. I will remind her about it from time to time. I am adamant about going every other weekend to visit. I would go every weekend if I didn't think it would stress her out (she worries about us driving across the state which increases her stress.....I can't be responsible for increasing her stress.) I put my foot down though when she told me I should just come once a month. He is my daddy. I love him SO much, and my heart is in a million pieces. I want to be with him as much as possible. And, it is such a great break for her to get to play with her grandson and pretend to be "normal" for a little while. Since he is mostly bed ridden, AA is not an option. However, they have found a counselor who is willing to come to the house once a week and "talk" to dad about alcohol. Hopefully that will be enough for the transplant team to see he is trying. Thanks for the prayers and support....I truly will sleep easier knowing you guys are rooting for us.
Butterfly- Thank you for your kind words. I am really glad I found you all too. I love your sig quote, "there is always hope." I truly believe that, and it's a nice reminder when I see your posts. All of you are in my prayers and thoughts as we go through this awfulness together.
Thank you again for such a nice welcome, and for reading my long winded posts....I will work on that! I hope everyone has a peaceful weekend. Hugs.
Alice, I love long posts. It helps to know what you are going through when you are so open. The more we know, the more we are able to be of help...or try to be.
The Ensure does taste pretty bad. Has Instant Breakfast or Slim Fast been tried? They have fewer calories than Ensure, but otherwise have pretty much the same nutrients and taste a heck of a lot better. I especially like Slim Fast's Chocolate Royal in a can. With my liver cancer and surgery, I lost my appetite for awhile and found I could enjoy Slim Fast when I just couldn't eat. I still keep a couple of cans on hand. Soup is also good....anything that will get nutrition in your dad. And do ask about the Periactin. Undoubtedly it was the drug (synthetic marijuana) that caused the hallucinations. I took Periactin years ago for a rash and there were no side effects. I don't recall my appetite increasing, but it was so long ago I really can't remember.
I hope the alcohol counselor will be sufficient for the transplant team, at least for the time being. I was fortunate to have been sober in AA for 6 yrs. when I was diagnosed with hep C in '93. The program's steps have enabled me to get through a lot of hard times w/o drinking.
Take care and keep us posted.
Post Edited (hep93) : 1/23/2009 7:19:11 PM (GMT-7)
I want you to know we went through the Alchohol mess with my husband and getting listed. He was so sick all of 2007 and half of 2008. We did find a counselor that was willing to come to the hospital if need be. That started the wheels in action. Also my husband could not stand the ensure or instant breakfast but the smoothies did wonders. I added Soy Protein (Not Whey) to them. It was very refreshing. See if you can get your mother to try different ones until she finds a flavor he likes. It took a while for that. I would even cut up bananas and freeze them. Also Wal Mart has other frozen fruit that can be used. I just tossed the frozen fruit in the blender with some ice a scoop of protein (Wal Mart also sells the protein). I used either Orange Juice or Apple Juice also. My daughter told me to add yogart but my husband didn't like that. Also Schwanns has just started selling the frozen fruit in individual packages for making smoothies. Just make sure you use Soy Protein not Whey. I hope this helps some. My husband did get listed. We still see the counselor once a month (mainly for me to vent). My husband never touched a drop of alchohol one he heard the word cirrhosis!!! I know what you are going through just remember you are not alone and there is HOPE.