Cirrhosis and a strange thing going on

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

polydipsia
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 12/14/2008 7:25 PM (GMT -7)   
Hi all, new member but I have become a frequent lurker. Out of all the boards I've visited, this seems to be the most understanding and helpful. My husband was diagnosed with cirrhosis about 4 years ago. He does not have hepatitis, he's gone through the usual things, vomiting blood, hepatic encephalopathy, etc. He's been banded several times. His doctors really don't tell us how he is, just write out scrips and all that. Yes, I know, I need to start being a lot more pushy about it, but you need to understand how my husband is about all this too. He's not exactly proactive and he is not very compliant with his meds. If they start to make him feel sick, he quits taking them. I've got a long rant building, lol, but I won't post it right now. Actually, the reason I'm posting is because he has sores all over his body. These aren't bed sores. And they are all over his back, rear end, stomach, neck, arms and legs and even one on his face. Last night he accidentally knocked off the scabs on two of them. One on his stomach right along the scar from his umbilical hernia operation a couple years ago and the other is on the back of his neck. The odd thing is neither bled. The one on the stomach was first and it has leaked fluid since it happened. I mean literally nonstop. Tonight it is slightly greenish and I told him I'm worried about it having either bile or an infection. The one on the neck leaks off and on. He does need to be drained. But is it normal for a wound to leak like that? And at such a constant rate? Have any of you ever witnessed or heard of this or experienced it? Also, a few nights ago his ear started to bleed out of nowhere. And apparently it happened again last night while he was asleep. Random bleeding like that worries me as I know that tends to be the way a lot of cirrhosis patient's check out, by bleeding out. Thanks for any input. I have told him he needs to go to the hospital or the doctor but until he's ready he will not listen. He's also running a low grade temp.

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 12/14/2008 8:04 PM (GMT -7)   
Welcome to the forum Poly. I feel the same way you do about this forum. I just joined myself.

I'm sorry to hear that your husband is resistant to seeking help. I experience the same problem with my husband from time to time. I can't really blame them. It is such a long and exhausting process. But, as caregivers, we must keep hope alive.

You have good reason to be concerned. It's possible that he has Shingles (a viral infection of the nerves similar to Chicken Pox). This usually occurs on one side of the body. I don't mean to scare you, but he should definitely be seen by a doctor immediately especially since he is running a low grade fever. His immune system is compromised by the Cirrhosis and an infection could be detrimental to his health.

Take care. You are in my prayers.

Penny

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 12/14/2008 8:15 PM (GMT -7)   
Polydipsia, You do need to be very concerned, nothing should leave the human body green in color. Acities is straw yellow and also most often people with ESLD have lower temps my husbands normal is 97.2 so a 98.6 is first sign of infection. Most infections can also cause him to become encephopathic also. I would call Dr or make ER run. I am sorry he is so ill and isnt helping himself maybe he is also just overwhelmed with all the issues.
Sue
When I started counting my blessings my whole world turned around.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/14/2008 8:16 PM (GMT -7)   
Hello polydipsia and welcome to HealingWell. I'm glad you found us.

You maybe right about it being an infection. It kind of sounds like a staph infection. My husband got that MRSI staph infection. If he had an open wound it drained puss. And he would have the low grade fevers with them.
Being in and out of ER's and his many hospitalizations is how he got it.

Is your husband on Xifaxan. It's an antibiotic that they sometimes give to liver patients for infections. Is your husband having trouble with encephalopathy? Usually that comes along with the infections.

Actually your husband sounds like mine in the beginning. He wouldn't take his meds right either at first. Once he came to terms with life expectancy if he didn't he got a lot better about taking them. My husband didn't like me telling him anything about his illness,meds,doctors,ect. We got into quite a few heated discussions over his non-compliance.

I understand your fears about a bleed out. It was my biggest fear. But lucky that didn't happen with my husband. Thank God. But to be honest it doesn't sound good that your husband is bleeding through his ears. Has he had any blood transfusions lately? Maybe he is due.

Hang in there..........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.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/14/2008 8:27 PM (GMT -7)   
Welcome to the forum Polydipsia. I agree with Penny and Sue. It sounds like your husband has an infection. Also, bleeding from the ear is not normal, even for people with liver disease. He really needs to see a doctor. I'm sorry that he isn't cooperative when it comes to his health care. I never had a problem with my husband and the meds except the lactulose. He had a major bleed a few weeks ago, and now he takes the lactulose and sticks to his low sodium diet with very little complaints.

Your not alone when you say that the doctors don't really tell you very much. My husbands doctors are the same way. I was so glad to find this place. I have learned very much here. It has helped me to know what to expect and what questions I may need to be asking the doctors. I hope you find it just as helpful and supportive as I have.

I will be praying for you both.
Butterflythree
 
There is always hope!


polydipsia
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 12/14/2008 8:38 PM (GMT -7)   
Thanks for the welcome Pscwife, Pink Grandma and Shadowsghost. I don't think it's shingles, I've seen those up close and personal and it doesn't really look like it, but then again, could be wrong. I agree with all of you and I have told him all of this but again, he's resisting. We have three kids and it's right before Christmas. I know he doesn't want to ruin the holidays but personally I think death would be a bummer, lol. Sorry, I have a strange sense of humor, hope it doesn't put anyone off.

Pink Grandma, no he's not on Xifaxan, he's on ciprofloxacin. He's supposed to take it on Mondays, Wednesdays and Fridays. He's been fairly good about taking it lately. He's only had full blown encephalopathy once at the beginning of the year. He was aware enough to be resistant to going to the hospital. I literally had to wait until he was so out of it, he didn't know the date, the day or the year. I don't even want to have to wait til that point again. He still has not done a DNR or a power of attorney, etc. I cannot get him to. I realize it seems really final, but he knows his prognosis. He was actually going to Nashville to see about a transplant back in June. The doctor then told him he had a 50/50 chance of surviving a year without a transplant. After that first year he has 0% chance. he won't be going for the transplant or to be put on a list because he decided to keep drinking. We went round and round about it until a wise person reminded me that he is 52, and I should pick my battles and that is one I will lose. It really kills me. Our kids are 8, 13 and 19. I am 38 and feeling about 10000 lol. I know that he's tired of being poked, prodded, cut open, etc. I can't pretend to know how much he hurts and all, but he really isn't making it easier on himself. He's also really lost his sense of humor. He really is just ready to die. His last transfusion was in October when he went in the week of Halloween, which is ironic since that is the 'anniversary' of his being diagnosed.

Shadowsghost, thanks. i totally agree. My sister is a nurse, so she helps me out when I get something strange come up. I do transcription for a living so of course my husband will ask me to translate for him but then doesn't listen to me, lol. When he does finally listen to me it's because he realizes it's not going to just blow over.

Pscwife. I have read a few of your posts and I'm sorry for your situation too. Please don't hesitate to email or whatever if you want to vent, etc. I try so hard to be optimistic for him and keep things going. Though times like this I just want to throw my hands up and say fine, sit there and feel sorry for yourself and get worse, though I never do. Sometimes keeping it together for the kids and him, working and life in general, I just really want to go find a corner and let go, lol. My inlaws live here in town but they are not any help. And I can't expect them to be. My MIL is almost 80 and my FIL is 85. I really appreciate y'all posting and the prayers. I'm glad I posted. Maybe now I'll keep my sanity? Lol.

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 12/14/2008 9:28 PM (GMT -7)   
Poly, my heart aches for you and your children. My husband is 62. Our kids are grown and we are enjoying our Grandchildren. Whenever my husband becomes uncooperative, my 7 year old Grandson can usually inspire him to press on.

You must feel the weight of the world. There is an old saying, "That which doesn't kill you makes you stronger!" You must be tough as nails.

My husband is suffering ESLD through no fault of his own. He was a selfless, hardworking man who always puts his family first. This has been exceptionally hard for him as he is no longer able to work. He has been disabled since May of 2006. I work very hard to ensure he maintains his dignity.

My father on the other hand died of cirrhosis due to alcoholism. He refused treatment and avoided medical attention until it was too late. Alcoholics are very selfish and don't often consider the impact of their actions on those closest to them.

This situation is so unfair. Hang on to your sense of humor for it's there that you will maintain your sanity. I feel blessed to have found this site. I have a difficult time signing off. There are some wonderful people here and it's great to talk with those who really understand what we're going through.

I will say a special prayer for your family tonight. Hang in there!

Penny

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/14/2008 11:39 PM (GMT -7)   
Hi, Poly, and welcome to the forum!  Guess what?  I was a medical transcriptionist for 15 yrs., prior to retiring on SSD in '05.  Having that terminology is a real ace in the hole, as you can understand the reports.  Also, I made sure my doctors knew about my job, so they would use medical language and not simplifly everything.  It made them a lot more open with me.
 
I'm a sober alcoholic (22 yrs.) and you're right...if your husband is intent on continuing to drink, there's nothing you can do.  Personally, I would leave.  I've done just that with 2 ex-husbands and a long-term b.f.  (I won't go into the psychology of why I chose these partners.)  However, I had been sober for 7 years when I was diagnosed with hep C, thank God.  I developed liver cancer and cirrhosis.  But I'm still here...because I don't drink, I eat a very healthful diet, and I do everything the doctors ask of me.  I also have a positive attitude.  Alcohol, as you no doubt know, is a depressant...so your husband may be thinking that he's going to die anyway, so he may as well drink, etc.
 
Everyone should have a Living Will, regardless of whether they are now sick.  In addition, you really need to get him to sign a Medical Surrogacy so that you can get info and make decisions for him when he is having bouts of encephalopathy.
 
I agree with the others that it sounds as though he has an infection and it really needs to be treated before he becomes septic.  My aunt just died of an infection.  Also, the bleeding from the ears is not normal.  When I had hugely swollen feet and calves, I had some "weeping," but it was light colored fluid and only in the edematous lower extremities.  BTW, I'm 65.
 
If your husband continues to drink, anything that is done for him is really just a band-aid and is not going to do a lot of good.  Like Dr. Phil, I "tell it like it is."
 
My heart does go out to you and your children.
Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 12/15/2008 3:13 AM (GMT -7)   
polydipsia

Just wanted to add my welcome to the forum. I agree with the othes comments as I too have cirrhosis and the things your are describing I have never experienced. I have had unexpected nose bleeds and blod clotting issues and I have had sores that come up on certain areas of my body that start out looking like a small red area and end up looking like a burn. I have shown them to my doc who believes they may be associated with crohns or some other type of immune problem (I have AIH), but have really not gotten a definte answer to the problem. I hope your hubby begins to take charge of his illness and cooperates with medical treatment. I do understand that there are times when you can't see the light at the end of the tunnel and it is easy to just give up. I hope you find the support here that I have and I wish you and your family good luck on this journey.

Lucy

polydipsia
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 12/15/2008 9:22 PM (GMT -7)   
Lol, Connie, you did MT too? Do you ever miss it? You probably don't miss the lowering pay rate, lol. I have considered leaving on a few occasions but my 13-year-old made it very clear that he does not want to. He has his issues with his dad, but he doesn't want him to be alone either. I honestly don't think he will be around much longer. Lord knows I could be way off base, but every week that goes by, he's a little sicker and a little weaker and looks more like death. We've had our 'discussions' on his drinking and how it's not really doing anything to be treated. The last time we went to his doc they gave him morphine for his pain. This is the first time they've ever given him anything other than hydrocodone or Darvon. My sister told me to start expecting the end. She said that's what they'd do in the nursing home. That it's the end medication. I do my best to make things as pleasant as I can. I have tried on several occasions to get him to discuss the Living Will and all but I think it's just too scary for him. He usually gets snarky when I bring it up. I don't care if he doesn't name me as the power of attorney, he can name his parents if he wants, I just think he needs one. And needs to discuss what treatment he does and does not want.

Lucy, Jeff has the random nose bleeds and clotting issues too. The sores start out looking like that somewhat too. They are awful and he itches all the time. He cooperates up to a point. I think at this point, almost 4 years later, he's just tired of being sick and is ready for it to end. Then some days he says he doesn't want to die. Understandable of course. It's really been a blessing to have found this board. Like so many others, I've learned a lot just from lurking and the compassion and help y'all are so willing to give is amazing. I've been to other boards that honestly just aren't that friendly. Lots of luck to all of you in the coming new year. And I hope to be active on the board as much as possible.

jen

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/15/2008 11:09 PM (GMT -7)   
Jen, Is hospice involved yet? If not you may want to consider it. They were very helpful not only to my husband but to me as well. I finally had someone to talk with face to face about my fears that understood what I was going through. They helped give me the strength to get a very difficult time.

I know it's hard watching your husband decline. And I commend you for sticking it out with him. It's very tough on you but I think for your kids sake .....they are already going through enough. Sometimes I wanted out also. But I knew at least for me I had to stay.......if I didn't take care of him ...he had no one else. And I knew that I could not live with myself had I left him when he needed me most. I have no regrets for doing so, even now.

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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/15/2008 11:46 PM (GMT -7)   

Jen, I missed it at first but stay amazingly busy...so now I'm glad I'm not working, especially with this economy; glad to know I'll have a certain amount direct-deposited in my bank every month and don't have to be worried about not enough lines or being laid off.  And I certainly don't miss the stress!  I was an independent contractor the last 6 yrs. that I worked, so there was no way to know from week to week how much I would make.

It does sound as though your husband isn't doing well if he's getting morphine.

Feel free to vent any time and do keep us posted.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


polydipsia
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 12/16/2008 12:40 PM (GMT -7)   
Pink Grandma, no Hospice isn't involved yet. Nobody has actually said you may want to consider or anything. Which is one of my main complaints. The appointments I did not go to with my husband were normal followup PCP doctor appointments and that was usually just checking labs, blood pressure, the normal stuff he would go to regardless of having ESLD. When he was getting ready to come home after having encephalopathy, I tried to see about getting a little help then, but his insurance would not cover it as he could still go to the bathroom himself etc. He can still do that, even though he doesn't shower as often as he did. I do go to his appointments like the gastro appts. And of course when he is in the hospital I am there constantly. Even then I have to chase down answers. You hit the nail on the head, that's one reason I did decide to stay. I couldn't imagine leaving someone like this, especially having spent 20 years with him.

Connie, you're not kidding about knowing how much you'll be getting, lol. Of course, some days I'm lucky to hit 1000 lines just from taking care of Jeff. But i don't want to be out of it completely as I know I'll need that income once he's gone.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/16/2008 9:56 PM (GMT -7)   
Poly, work is also a great distraction.  Between the chronic fatigue of hep C and the pain from sitting following hip replacement and revisions, I just couldn't do it anymore.  I was only 4 yrs. away from full retirement, anyway, and got what I would have gotten then when approved for SSD.  about the same time I was approved for SSD, I was diagnosed with liver cancer...so it worked out for the best.  wink
Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 12/16/2008 11:31 PM (GMT -7)   
Jen, If Jeff is looking to the cure(which is transplant) you can call hospice yourself and get the info for the referral for them to come in. What ever insurance doesnt cover they will find a way to get it done. You DO need the help. You can get the basic Medical POA form on line fill it out and have him just sign it with two non related people. It doesnt have to be done by an attorney or a Justice, at least not in MA. Not one DR or hospital has refused to discuss medical issues with me and we are not even married. I even deal with the state on anything to do with the program I have for his PCA to be paid.
You may just have to take the bull by the horns as it is your life too you know, you and your son deserve the help if not just to make your lives as easy as possible under these circumstances.
Sue
When I started counting my blessings my whole world turned around.

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 02, 2016 9:41 PM (GMT -7)
There are a total of 2,731,950 posts in 300,977 threads.
View Active Threads


Who's Online
This forum has 151137 registered members. Please welcome our newest member, Country girl2.
285 Guest(s), 3 Registered Member(s) are currently online.  Details
Fairwind, poohcheez, otheym432


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