need help/information about my father's condition

New Topic Post Reply Printable Version
28 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

LanieG
Forum Moderator


Date Joined Nov 2006
Total Posts : 5397
   Posted 6/2/2009 5:18 AM (GMT -7)   
Stogierogie writes: "Hello, New here. My dad is 69 years old and has been diabetic for about 20. He liked his liquor for sure and wasn't smart in taking it with his medication over the past some odd years. He stopped drinking completely about 8 months ago. He has had 2 heart surgeries, Gastric bleeding and is on blood thinners. about a month or so ago we started noticing he was acting sluggish and not very coherent. We brought him to the hospital and we found out he very high ammonia levels. It totally looked like he had a stroke the way he was acting and at the time he was taken off the blood thinner so my mom and myself thought he had to have taken a stroke or a few mini strokes. Cat scans all proved negative. They started administering lactulose and it wasnt working so well orally so they had to give it to him via enema. He seemed to us like he was in a coma when we would see him. It was a horrible thing to witness seeing him day in and day out like that. When he finally starting moving his bowels he eventually came around to a more coherent level. He was sent home after a week or 2 stay. He seemed to be getting better. But its now a month later and it seems that the lactulose which has SUGAR no less isnt working as well even after docs had him up his dosage. He started taking metamucil, bran muffins, you name it. He doesnt seem to be going to the BR as much as he should and he isnt that coherent alot of the time and walks like a zombie. He also has that twitch in his arm ive read about. I would assume he has cirrhosis and have asked my mom about getting on some type of donors list. She just gets upset saying he might not be a candidate with his age and the diabetes and all. We know his organs are damaged but can the liver REALLY heal itself? We just feel like there is no light at the end of the tunnel. How long does it take in alot of cases for the liver to do this? and what about his encephalopathy too? It's like hes in a fog and cant do simple things. Just watching him eat looks like its a task to do. It's awful and its driving my mom to the edge. This is all new to me so im sorry this is a long read. There is only so much praying i can do without feeling i want to do SOMETHING ELSE to help his condition. Thanks for reading"
Stogierogie
Lanie
forum moderator - diabetes
diabetes controlled so far by low/no carb diet and exercise; no meds


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/2/2009 12:21 PM (GMT -7)   

Stogierogie, the Diabetes moderator copied your post over here.  I hope you will come here for the reply.

My first suggestion is that your dad be seen by a hepatologist (liver specialist.)  Other doctors really are not educated enough in diseases of the liver to be of much help, though apparently they did the right thing in the hospital with the Lactulose.  Since he's a diabetic, they may need to come up with an alternative, though as far as I know they are all sugar-based.  As you've learned, the confusion/coma state is hepatic encephalopathy.  This usually happens in end-stage liver disease.  It sounds as though he hasn't had a firm diagnosis yet.  He most likely has cirrhosis, also.  Only a hepatologist can give a firm diagnosis and treatment plan.  There is a lot to go through before someone can be put on a transplant list.  It could be that your dad's other medical problems would preclude his being listed.  However, to find out he must see a specialist.

Please feel free to post here at any time.

ETA:  I just read your other posts on the Diabetes Forum.  I wasn't aware that your dad is under the care of a liver specialist.  I do recommend that you read the educational thread in Hepatitis Resources located in the folder at the top of this forum, to educate yourself more.  Then you will know what questions to ask of your dad's doctors.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 6/2/2009 1:28:17 PM (GMT-6)


stogierogy
New Member


Date Joined May 2009
Total Posts : 18
   Posted 6/2/2009 3:06 PM (GMT -7)   
Thanks. At this point he has lost alot of weight since being home from the hospital but that has stabilized for the most part since it was water weight. He just now was told by his GI (i think it was his GI if my mom told me right) to stop with both water pills he was taking. His voice sounds so weak that i have to really concentrate when he talks to me. The doc says that he is very dehydrated so my mom is making sure he drinks plenty of water. She said the thing to worry about now is his sugar level. he is still very very weak at this point although he can get around and do simple things for the most part. My mom asked about the possibility of a liver transplant but they said its not possible at this point. Im sure it has to do with the stage he is in eg. the diabetes and the condition of his kidneys and basically the whole mess that he is. I suggested a vegetarian diet but my mom doesnt want that because she said he needs his protein. As far as im concerned there are other ways to get protein other than meat but this is coming from someone who loves hamburgers. (myself). Thanks for the helpful info, i will be sure to school myself on this. It's just very sad to read about peoples struggles here then eventually losing the one they love. I am not a reader of this kind of stuff on the internet usually but one has to learn so i continue to read and this site is becoming therapy for me.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/2/2009 3:37 PM (GMT -7)   

Stogie, it's good to have you here.  If your dad starts retaining fluid again, he may need to go back on at least one diuretic.  I am on both Lasix and Aldactone.  The problem is that Lasix depletes the body of potassium, which can be dangerous to the heart.  So the Aldactone helps prevent that, and is also a mild diuretic.

If your mom can manage to eliminate beef, it would help a lot.  He can still eat poultry and fish.  I get ground turkey and mix it with A1 Sauce.  I then grill it on my contact grill and I swear it tastes like a regular burger, especially if I use ketsup on the bun, though I usually use cranberry mustard.  She can also up the amount of fruits and veggies, fresh if possible.  I don't have diabetes, so I don't know how much fruit he could have without it playing havoc with his sugar levels, but I guess it would take some experimentation.  If he absolutely insists on having beef, just try to make it no more than once a week.  It's the hardest thing for the liver to process.  However, you are correct that we need protein, and there's no reason to go completely vegetarian.  I do more with beans in the winter and also eat a lot of ratatouille (a vegetable stew), but in this warmer weather I don't want to be bothered.  It would be a good time for her to make more main meal salads, though, with grilled or roasted turkey or chicken strips.  Just a few suggestions.

The transplant process is such an odd thing.  One must be sick enough to need a transplant (REALLY sick), but at the same time healthy enough to go through the surgery with a good chance of survival.

Just keep educating yourself.  Knowledge is power!


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/2/2009 9:57 PM (GMT -7)   
Hello stogierogy and welcome to our hepatitis forum. It actually should be a liver disease forum as we have members who are dealing with all types of the different liver diseases not just Hepatitis.

One of the best things about this forum is the education gets shared about liver disease. Most doctors don't have the time to educate their patients or their family. I have learned so much more here on this forum than from all the different doctors that my husband saw put together. And believe me there were a lot of them. And also you have people to communicate with that know exactly what you and your family are going through. That in itself is priceless.

How long has your father had diabetes? That makes it a lot more trickier to treat the liver disease. Does his doctors talk to each other? They should so that they can decide on the best course of treatment for your father to manage both illnesses successfully.

We are glad that you are here........take care.....thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


stogierogy
New Member


Date Joined May 2009
Total Posts : 18
   Posted 6/3/2009 12:47 PM (GMT -7)   
Hey PG, thanks for the thoughts. He has had diabetes for at least 20 years that i know if. He liked his beer over the years and he liked his scotch. And all those years of enjoying it too much has caught up on him. Yes, his doctors talk to each other according to my mother so I too believe that's a good thing. Not sure how much damage you can do while drinking and taking insulin but im sure it did PLENTY.

LanieG
Forum Moderator


Date Joined Nov 2006
Total Posts : 5397
   Posted 6/3/2009 2:41 PM (GMT -7)   
Stogie, regarding the diabetes only, alcohol can be a problem for people on diabetes medication (including insulin) because of the possibility of creating very low blood sugar which can make someone pass out or act "drunk" whether he's impaired from alcohol or not.  There used to be a tendency to let someone who appeared passed out because of alcohol to sleep it off when in fact he'd passed out because of low blood sugar which could cause coma and death if the blood sugar actually went too low.  This is why blood sugar testing is so important to diabetics.  Also, if the diabetic has neuropathy, large amounts of alcohol can cause further damage there as well.  Reasonable alcohol consumption can be tolerated by a diabetic as long as he watches his blood sugar.  Here's a link that explains more about diabetes and alcohol.  http://www.diabetes.org/type-2-diabetes/alcohol.jsp  If his blood sugar is well-controlled at this point, then this is one immediate thing you don't have to worry about as much. 

Lanie
forum moderator - diabetes
diabetes controlled so far by low/no carb diet and exercise; no meds


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/3/2009 6:30 PM (GMT -7)   
Since alcohol has a lot of sugar in it, I would think it would increase a diabetic's blood sugar.  But I'm certainly not very knowledgeable about diabetes.  However, Stogie, you did mention that your dad stopped drinking entirely 8 months ago, so that is one less thing to worry about.
 
ETA:  I just went to Lanie's link and now I understand how alcohol can lower blood sugar.



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 6/3/2009 7:33:51 PM (GMT-6)


stogierogy
New Member


Date Joined May 2009
Total Posts : 18
   Posted 6/7/2009 7:28 AM (GMT -7)   
At this point he has been day to day. I swear it's like a roller coaster ride and i feel the worst for my mom as she has to deal with this day in and day out. One day his sugar is low the next day its high.
yesterday his sugar was good, yet this morning he checked it and its 400? My mom found out about a week ago that he wasn't fully turning the insulin bottle upside down so he basically wasn't giving himself his injections properly. It's pissing him off that was keep asking him if he took his insulin right but at this point im going to suggest to my mom that she or I watch him every time he takes it. If his head is in a fog why would we expect him to do it right? Doctors say at this point that they are not even sure that he has cirrhosis without a biopsy but im guessing they are trying to keep us optimistic. But this encephalopathy is kicking his ass. His bowel movements have been at least 3 times a day which is good but the sugar seems to be a problem. My mom just has him eating fish or chicken and the occasional burger like he had last night. thank you for all the helpful info. My mom tells me that when she takes our dog for a walk she talks to him, and complains to the dog. i then told her thats why the dog came to me and asked for earplugs the other day. maybe there was a reason i moved back home 2 years ago? life works in mysterious ways.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/7/2009 12:19 PM (GMT -7)   

Stogie, it's true that the only sure way to know if a person has cirrhosis is through biopsy.  A specialist may be able to detect it through physical exam (the liver will feel hard and lumpy), and sometimes there are other symptoms such as muscle wasting. 

I love the idea of complaining to the dog.  And you have a good sense of humor.  That's really necessary when dealing with a long-term, roller coaster illness like liver disease.  I remember when I had liver cancer (a virtual death sentence), my sister telling me I looked really good for a dead person.  You do have to keep a sense of humor.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


stogierogy
New Member


Date Joined May 2009
Total Posts : 18
   Posted 6/7/2009 3:39 PM (GMT -7)   
yeah trust me i HAVE to be comic relief for my mom it seems. im a wise asss by nature so anything i can do to help i will. i know i said his sugar was 400 but when supervised literally an hour later his sugar was much lower. hes just not doing it right. today has been one of those bad days though. hes walking like someone out of a george romero flick and hes just out of it. he sits there with his mouth open likes hes trying to catch flies. my mom says shes calling his liver/GI tomorrow to find out whats going on and get some answers. she feels shes getting the runaround. I tell her i kinda agree. i HAVE to keep in good humor or ill just break down.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/7/2009 3:57 PM (GMT -7)   
Stogie, his Lactulose probably needs to be increased.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


stogierogy
New Member


Date Joined May 2009
Total Posts : 18
   Posted 6/7/2009 6:09 PM (GMT -7)   
hep93 said...
Stogie, his Lactulose probably needs to be increased.


But what if hes going to the bathroom plenty? It's like the lactulose is making him move his bowels 3 or 4 times a day but yet today hes very much in that familiar foggy state.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/7/2009 9:08 PM (GMT -7)   
stogierogy, maybe he has an infection. Sometimes when the lactulose isn't working there's an infection going on that causing the encephalopathy. Take his temp and see if it's elevated or if he has any red areas of skin like on his shins that's hot to the touch. Just a thought.

Take care.........thoughts and prayers...........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


stogierogy
New Member


Date Joined May 2009
Total Posts : 18
   Posted 6/8/2009 2:12 PM (GMT -7)   
i will look into that thanks. toady is a worse day than yesterday. the GI kinda blew my mom off from what she said and said to speak to his PCP. Jerks. Strange thing is, they keep saying to focus on his sugar yet its fine today but hes out of it though. But yet he hasnt gone to the bathroom AT ALL today and i know that cant help.

edit: no temperatures at all. i informed him i will invoke the foot method if he does not go soon.

Post Edited (stogierogy) : 6/8/2009 3:26:32 PM (GMT-6)


stogierogy
New Member


Date Joined May 2009
Total Posts : 18
   Posted 6/9/2009 12:19 PM (GMT -7)   
Just to follow up we took him to his PCP today who plainly said that there is no light at the end of the tunnel. He cited too many organ problems(heart, liver, kidneys)and that the hepatic encephalopathy will never go away. It will just go and come back again. It doesn't make much sense to me. His sugar is ok. His bowel movements are ok. It's like trips to the bathroom arent doing much anymore. it seems like his ammonia levels are back up again but we wont know until we get the blood results from today. He is exactly back to the way he was before we first brought him to the hospital just over a month ago. Except right now he has the shakes worse than he has ever had. He used to have just the tremor in his hand which i read is related to the encephalopathy but now its his WHOLE body that shakes. The doctor had no answer. He said there is nothing they can do because more treatment means more pills and he doesn't want to do that. He is on these water pills so i guess everything coming out of his system might just be dehydrating him. I managed to get a wheelchair from my job so i could take him to the doctor but hes a stubborn man and just refused. Yet his walking and balance are completely slow and off. He needs a hand wherever he has to get to around the house. I think i have to resign myself to the fact that he is not going to get better. I can pray and hope all i want. I just don't see this turning out positive but i hope to god i am wrong. My mom is going to apply for some sort of home care because she needs it since she watches my godson a few days a week as well. Im doing what i can to help but i work as well. This is all just so depressing. My mom and myself dont feel he should be at home but rather in his hospital but they are not going to do anything for him there.

Post Edited (stogierogy) : 6/9/2009 1:33:26 PM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/9/2009 12:43 PM (GMT -7)   

Stogie, I'm so sorry that the outlook seems bleak.  It does appear that he needs home care or perhaps a nursing home.  If he starts falling at home, then a NH will become necessary--and possibly a W/C, too, whether or not he likes it.

Try to make sure that he is getting enough fluid so he doesn't become dehydrated.  Let us know the results of his blood work when you find out.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


stogierogy
New Member


Date Joined May 2009
Total Posts : 18
   Posted 6/9/2009 1:55 PM (GMT -7)   
hep93 said...
Stogie, I'm so sorry that the outlook seems bleak. It does appear that he needs home care or perhaps a nursing home. If he starts falling at home, then a NH will become necessary--and possibly a W/C, too, whether or not he likes it.

Try to make sure that he is getting enough fluid so he doesn't become dehydrated. Let us know the results of his blood work when you find out.

e
We just made him eat jello and drink some lipton green tea. Im just scared he will slip into a coma overnight which to me would seem fatal. What's stupid is the bloodwork he had done wasnt for testing his ammonia levels. My mom says the PCP cant do that. But we dont have to be doctors ourselves to know his ammonia level is high. My mom just still wonders to this day if he took some sort of stroke since all the signs are so much the same. Cat scans all proved negative back then. She should know as well since her mom and dad (my grandparents) both took a stroke at separate times. At least if he was in the hospital he'd have an IV and constant attention (or we would like to hope so)

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/9/2009 2:35 PM (GMT -7)   
Stogie, why can't the PCP test for ammonia level?  Does he have his own lab?  If so, and he's not equipped to test for it there, he can very well send it out to an independent lab for testing.  Since your dad is having encephalopathy, there's no excuse for not testing the ammonia level.  From what I've heard and read, hepatic encephalopathy does seem to mimic the effects of a stroke.
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


stogierogy
New Member


Date Joined May 2009
Total Posts : 18
   Posted 6/9/2009 5:22 PM (GMT -7)   
hep93 said...
Stogie, why can't the PCP test for ammonia level? Does he have his own lab? If so, and he's not equipped to test for it there, he can very well send it out to an independent lab for testing. Since your dad is having encephalopathy, there's no excuse for not testing the ammonia level. From what I've heard and read, hepatic encephalopathy does seem to mimic the effects of a stroke.


Yes like you said they would need the lab to test it (which wasnt there)and the doctor didn't suggest doing the test at all to be honest. To be honest even if the ammonia levels are high what are they going to do? up his lactulose again? They've done that. They've upped his insulin. As far as im concerned hes OVER-medicated. But what do you stop taking or take less of? It's a god darned mystery. It's like no one really wants to do anything else or MORE i should say with his condition. Too many cooks in the pot, know what i mean? Tomorrow my mom will call the liver specialist who kind of blew her off last time and try to get some truth out of him. she said shed be pleasant but very forthright. My brother stopped over from work so we poked fun at him even though he only sorta understands. Hand of god? Im not a very religious person but im saying my prayers. I just hope he gets some sleep tonight and gets through the night. Thanks for your thoughts.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/9/2009 8:11 PM (GMT -7)   
I know it can be confusing and frustrating dealing with this disease.  That is the very best thing for your mom to do--nail the doc down and get some answers.  They usually do not want to give a time frame for how long a person has to live...but if it's framed as "Can you give me an educated guess?" (which is what I did), you may get some kind of answer to that question.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


stogierogy
New Member


Date Joined May 2009
Total Posts : 18
   Posted 6/10/2009 7:07 AM (GMT -7)   
We we had to take him at 3 this morning because he was worse than ive seen him. To go along with his heart surgeries from 05 i think, he has a pacemaker. Well the ems tech noticed his heart rate was irregular so he gave him some kind of meds that helped. Hours later now i come to find out that he has Ventricular tachycardia. now i heard they might have to remove his pacemaker in favor of an ICD (below)

straight from wikipedia:

An implantable cardioverter-defibrillator (ICD) is a small battery-powered electrical impulse generator which is implanted in patients who are at risk of sudden cardiac death due to ventricular fibrillation. strange how his heart was the strongest thing going to date but now maybe not. It's like everything is slowly breaking down. All this while as suspected his ammonia levels were high again. Hes somewhat coherent. I just stopped home to take a shower and get my bearings and go back up to meet my mom.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/10/2009 10:18 AM (GMT -7)   
Stogie, I'm so sorry that your dad has suffered another complication.  I know it's not only hard on him, but on the family as well.  I will keep you in my thoughts.  Please keep us updated when you can.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


stogierogy
New Member


Date Joined May 2009
Total Posts : 18
   Posted 6/12/2009 7:00 PM (GMT -7)   
Hey there. He is doing better in the hospital again. Not sure if they are going to put a defibrillator inside him as of yet but they cant seem to get his goddarn sugar levels down. He is DEFINITELY not having enough bowel movements which doesn't help. I don't get it. Lactulose has sugar in it. He is diabetic. Isnt there something else i could reccomend to his doctors? Prune juice has sugar as well. Metamucil worked for a while and like lactulose and prune juice he kinda gets immune to the stuff after a while. How can there not be a better alternative? I dont want to start asking about detox teas. Im just looking for alternatives to keep his sugar at more acceptable level so he get his normal mental state back. He's better, but hes still off. He is going to be getting some soft of home care which he NEEDS which is good. My mom needs the help.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/13/2009 9:43 PM (GMT -7)   
Hi, Stogie.  While there are a number of different laxatives, the goal is to remove excess ammonia and I believe that Lactulose or Enulose are the only ones that accomplish that.  You might also ask the doctor about possibly prescribing an antibiotic.  That sometimes helps the situation.  It's a difficult balancing act as it is, but with someone with diabetes it is really very difficult and frustrating.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

New Topic Post Reply Printable Version
28 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Monday, December 05, 2016 11:46 AM (GMT -7)
There are a total of 2,733,056 posts in 301,078 threads.
View Active Threads


Who's Online
This forum has 151231 registered members. Please welcome our newest member, safikul.
362 Guest(s), 10 Registered Member(s) are currently online.  Details
countess18, tickbite666, iho, pmm73, NewDay, The king, hatter15, julymorning, Sissy63, Graytech


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer