Thought I was alone

Hi CHILI and welcome to Healing Well. I am sorry that your son is so ill and you are feeling so frustrated. You will find that this site provides a tremendous amount of information that the members have provided. The info is based on personal experience or well gleaned information that members have researched. Pink Grandma is our forum moderator and she is not only compassionate but well informed. As for the current situation with your son it is difficult for you and your husband I know. He is a grown adult and if he is of sound mind then he can make his own decisions. However; if he is reliant on you for financial support and taxing him to and from appointments etc. then it is a different story. I am sympathetic to his frustration too. Certainly he must realize that if the Dr suggested Hospice it is because he is end stage and unlikely to recover. That would be a tremendous emotional blow for him. He knows that he is deteriorating physcially and surly he is angry and scared. Has he stated why he wants to move? As hard as it is it seems to me that you need to have an honest and candid talk with him regarding his prognosis which by all indications in your post the prognosis is poor. It is common for end stage patients to display a variety of emotions so don't be surprised. He probably has encephalopathy and is not aware of his own actions and anger. The tiredness is also common. I would suggest that he rest as often as needed and that you and your husband encourage him to nap frequently. Pain is also a problem for end stage liver disease. It may be some help to you to read some of the posts as there is a wealth of information in them. As far as your statement "We too have no idea as to how serious his condition is" His condition is very serious and you may want to do some research on the interent in relation to end stage liver disease. I hope that this has helped a little. Please continue to post and ask questions, vent, or whatever. We are all here for you.
Shelly

Hello Chili and welcome to HealingWell. You are not alone anymore. There are a but of nice people of this forum who will be very supportive.
about your son driving......His doctor should send something to Dept of Motor Vehicles to have his license suspended. They did that to my husband, but my husband was smart enough to give up his license a voluntarily a year earlier. Talk to his doctor about it.
Getting their sleep mixed up is a classic symptom of liver disease.
Crankiness is another. It's hard for some people to hand over the reins of their life to someone else. Probably deep down he knows that his time is limited and that's a hard pill to swallow also. Itching is another classic symptom.
Has there been any talk of a possible liver transplant with his doctor?
And don't ever think that you are not making his life better. Whether he admits it or not he knows that you are helping him. Sometimes when encephalopathy sets in and they get real ugly to their caregivers. Face it . You are the closest person to him. That old adage " you always hurt the one you love" is true. Even for parents and kids not just for husbands and wives. Try not to take it personal. I know it gets real old real fast. When he upsets you take a walk. Remember it's the disease ....not your son talking.
Keep coming here and we will be there for you.
Take care .........thoughts and prayers.

 

     Chili: I'm seeing it from the inside. I know my personality has changed and I am not the same. My husband has been of tremendous help to me . I have clear days. And days when I just cant function.  Ususall due to a need for more lactulose.    My mental state is the worst of my symptoms. I did have the itching for about a month then it went away , a little swelling of the legs but the meds I take for my blood pressure have helped. I have put myself on as strict diet, very low sodium, no meet, drink lots of water and fruit juice. Eat fresh vegetables and fruits. Do not have any other medications for the cirrhosis other than the lactulose. I have severe arthritis but cannot take any type of pain medication.  I realized just how this has affected my family and have told my husband if I get to the point where I can no longer take care of my self I would not him to be burdened with me and should put me in hospice. He knows I am serious. I also do not sleep at night for me I guess its a fear of going into a coma. If I do I have ask not to be put on any life supports. I don't understand why your son would want to move. I could'nt live by myself. I need help for lots of things. Stop worring about him . If he is a stubborn person he will do whatever he wants to do no matter what any one says. keep posting there is always new information on this forum.  Pinkgrand ma and Shelly are tops. Along with so many others.   june

Lucy: Just thought I'd check in and see how you are doing . I'm still dealing with the sleepless nights. My pcp prescribed something , finally!!!! to help me get some sleep. Well guess what? I do mail order prescriptions and that was the only one of my prescriptions that has been lost in the mail. It's been over a month now. Guess I can make it throgh for a while longer. Don't know if I will have a reaction to them or if they'll even work. Then I get stuck with a three month supply of useless meds. oh well it could be worse. Have a good day. june

Hi everyone and thank you so much for your support and help. There has been a major change here. Jim is now willing to stay here. Yaaay. He has had two good days in a row. He is thinking clearly and was able to communicate with logic and passion. I so love him. His "good" days make all my difficult days go "poof". A week ago his siblings were here and they had a real heart to heart talk with him regarding his wanting to move out on his own. I was holding my breath expecting Jim to tear into me after his sibs had left. Guess he really heard what they had to say and how concerned they were.

I know that his good days and good moods can change swiftly but today I celebrate.

I have so many questions about this disease and I am looking forward to chatting with all of you. I understand the personality changes when the encephalopathy level goes up. And boy it can strike without a hint. We have had many trips to the ER just dealing with that. We dole our the lactulose but there are times when that just doesn't do the job. I understand the fear of knowing you could go into a coma and never come out of it. I know it is Jim's greatest fear. It is ours also. June, I hear Jim say the same thing. He is afraid to sleep at night for fear that he won't wake up or he will wake up in the hospital again.

The weight loss is incredible. There are times that Jim simply cannot eat because he feels so ill. I keep a supply of supplemental drinks for him. It's not the best but it's better than nothing. The edema and the acides is a great problem, too. Each stay in the hospital results in 40 extra pounds of fluid in his body thanks to the IV's. That never made sense to me given his condition. Saline IV's when the diseased liver has a difficult time with salt? One doctor out of many actually heard me voice my concerns about the IV's and agreed to a 1/2 solution for a short time.

Jim's greatest problem is the skin eruptions. They weep. They itch. They bleed because he scratches them in his sleep. He has seen dermatologists and is now seeing an allergist. More Meds! And little cure.

Diet is my greatest challenge. Jim simply will not eat a healthy diet. He is very picky. We do low salt, whole wheat, lots of salads and lots of fresh fruits. He does enjoy the mulitgrain cereals now. There is hope. Jim has a passion for pickles, lemons, and lemon juice. He tends to go through phases but the phases are over-indulgence. His mouth breaks out frequently and I have suggested that he might want to cut back on the lemon juice, etc. He likes tea but uses three tea bags for one cup of tea. I hid the lemon juice.

Jim is always cold. I bought him a warming blanket for his bed and he really loves that. We heat mainly with wood and he gets so close to the stove that it scares me. I watch him like a hawk.

When the ammonia level goes up...encapholopathy...he is confused and could take the wrong amounts of meds or insulin if I don't dole them out for him. He has so many symptoms and from hour to hour I don't know what to expect next. I have talked with is doctors and just get the umm humm. They just nod their heads and tell me that this is normal. Okay, if that's normal what can we do to make him comfortable? No answer to that one.

Pink Grandma, thank you for the insight and for the helpful reality checks. I just need to know that what we are dealing with is "normal". Know what I mean? Transplant is out of the question. For one, Jim has a long standing history of drinking and using illegal drugs. For another, one of the requirements for this surgery is to have complete dental care done. His Medicare and his supplemental insurance does not cover dental. He need about 24 hundred dollars worth of dental care. I don't take Jim's verbal abuse personally, really. It just wears me out and makes me wonder if I am giving my all.

Shelly, thank you too for your support and ideas. Yes, I do have lots of hobbies but at this time many of them are on hold. My husband and I like to fish and hunt but we have to do that in shifts. Mostly I read, garden, and cook. We have lots of friends and family who visit us. My other kids are not able to help out with Jim because they live so far away or they are working. They have offered to come over so Nick and I can get away and have time together. I even wrote up a list of when Jim has his meds and what meds to give him. But....lots of buts here. They just are not able to step up to the plate.

Lucy, I am so sorry to hear that you have been diagnosed with cirrosis. I hope it is in the early stages and that you will be able to have a transplant. At least there is always hope. There are so many wonderful treatment programs that will help and new medical help is always on the way.

Well my new found friends, again, thank you. It is time to sign off and get Jim's insulin ready. Sincerely, Lee

Thank you Pink Grandma. I'll be sure to remind Jim about the pickles and lemons. Every little bit of information makes our days that much better. Just wish I knew why he has the cravings. Is there something lacking in his diet? Wish I knew why these past three days have been almost perfect, healthwise, for him. If we knew what we were doing right, we could just keep on with the program. Yeah, I know..... However, I do feel that he is relieved about his decision to stay here. Stress does have an impact on all of us but more so on someone with a disease such as his. Thanks again. Lee

Hi Butterflythree, We must be on the same wave length. Just this morning I was telling Jim that I wish we knew what we were doing "right" because he has had a full five days of feeling almost normal. The skin breakouts are still a mystery and currently they are his greatest cause of distress. The itching keeps him awake and often it is unbearable. Lotions, pills, etc. Nothing seems to reduce the skin eruptions or the itchiness. The doc says it is the liver unable to process toxins so the bad stuff is coming out through his skin. The other doc seems to think that part of the eruptions are related to an allergic reaction to something he picked up at the hospital. This has been going on for years. The five good days have been free of the encephalopathy symptoms. However, you are so right. It can hit at any time. So yes, we are enjoying Jim's good days to the fullest. Jim has only 1/5 th of a functioning liver. How is your husband doing? What coping skills has he acquired? The best part is that you have each other. Thanks, Lee

Hi Butterflythree, Well, Jim's good week has ended. He started looking jaundice yesterday and now he is showing signs of ascites. Like you, I don't know why we had a good week but it was wonderful. He too takes lactulose to reduce the encephalopathy but today he was showing signs of that too. Yep, it is a roller coaster ride, isn't it? I called the doctor's office three times today but never got a call back. I am never sure of what to do since this disease is such a challenge. And a mystery. Guess the docs didn't think we had a high enough level of concern. Jim is a little better this evening. Okay, another sleepless night for me. Thanks for responding. Yes, your are right, there is always hope and that is what I cling too, HOPE

Hi Lee, You are so right. This disease is a roller coaster ride. I'm sorry that Jim's good week has ended. I will pray that he has another very soon. I hope you are able to get some rest.

Take care.

Lee, my husband was on oxycodone, also, for severe back pain. He has hep b w/ cirrhosis. He was told that oxy, an opium nasal spray, and morphine pain patches were the only thing that he should take because of his liver disease. (I am not sure why, maybe because they are stronger and get in and out of the system faster without leaving residual effects?) I noticed the oxies gave him more energy then normal, even caused him NOT to sleep when he should be. One thing you must keep reminding yourself of, though your intentions concerning his food intake are purely out of love, he may have the outlook that he is going to live the rest of his life, his way, not yours. Believe me, I know how hard it is to watch someone do things that are going to hurt their bodies, but maybe for your own good, let him have his cheeto fix without giving him a hard time,,,actually it may be driving him to be more rebellious by "talking" about his diet so much. I would much rather someone have cheeto binges, then drinking binges,,,,for you own sanity you are probably going to have to prioritize issues, or you will find yourself constantly in an uproar about something with your son. By the way, welcome:)

CHILI/Lee, I wanted to stop in and welcome you to the forum.  You have been getting some good info and suggestions.  I personally think part of your son's anger, etc., was due to drug withdrawal.  There could be some encephalopathy, also, but I do believe withdrawal was involved.  The good week that he had might be directly in response to his being on oxycodone.  Do you know for sure if the Rx was written by the same doc who refused him pain pills previously?  Or could he have gotten them illegally?  As a clean and sober addict/alcoholic, I can tell you that we can be really sneaky.  He could have gone to a different doctor, bought them from a friend of a friend, etc.  It really is essential that he not drink alcohol.  Has he ever been to AA?  Do you think he would be willing to try it, or try it again?  It literally saved my life--and at the time I was diagnosed with hep C, I had been sober for 6 yrs. and was on no drugs whatsoever.  Due to osteonecrosis, a disease in which bone dies, I had to start taking pain pills about 6 years ago.  I've had both hips replaced and 2 revisions...and will need another down the road.  I continue to take pain meds (Lortab), although in the past few months I've been able to cut the dosage to 2 a day.  I was prescribed ibuprofen 800 mg 3 x a day, but now only take that as needed....maybe 3 tabs a week.  I know that if I were suddenly taken off Lortab and it was not replaced with any other opiate, I would definitely have withdrawals.  My body has built up a physical tolerance.  I do not consider it addiction, which is a mind-set in which the addicted person always craves more (if one is good, 2 is better, etc.)  My doctors are fine with what I take and pleased that I have recently been able to decrease the amounts.

Since your son is not letting you have access to his pain pills, be aware of sudden agitation.  It could mean that he has run out of pills before he can renew them.

I also had the thought that his skin eruptions could be psorhiasis.

If he moves out, but lives nearby, it actually might work out for him.  Either way, you are going to worry about him.

Hugs and prayers for you and your family,

Connie

June, try taking Benadryl when you take the oxycodone!  That could stave off the itching if it's an allergic reaction.  ;)

Hugs,

Connie