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I am new, seeking info regarding parasentisis

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Posted 9/26/2008 4:44 AM (GMT 0)
Hello,

I am new to this board, and I'm so glad I found you!

 

I am seeking support from those of you who have been through the end stages of cirrosis, particularly alcoholic hepatitus and parasentesis.  I have been trying to help a friend of mine through this, feeling quite helpless to really DO anything...but at least I want to know whatever I can find out from you, who have been there. 

This friend is a 56 year old man who was just diagnosed about a month ago, (after I insisted he go to the emergency room) when his skin became so jaundiced, and he ballooned up 40 or 50 pounds overnight. His diagnosis was cirrosis, pancreatitus, gall stones, ascites, the works.

Within the last ten days he has had fluid drained twice, 7 liters once, 8 liters on Monday. At the follow-up appt today the doctor wanted him to return to E.R. immediately, due to his belly being red hot with apparant infection. This is all happening fast, and I just wonder what may happen next?

I need a quick course on the basics please, and any advice you can share...Thank You!

Post Edited (writeleft) : 9/25/2008 10:48:04 PM (GMT-6)

Posted 9/26/2008 9:53 AM (GMT 0)
Hi writeleft and welcome to the forum.

First of all I am so sorry that your friend is having to deal with this disease. There are several older threads that describe the stages of end stage liver diesease that I am sure you will find helpful in describing symptoms that can occur.

Again welcome and we are glad you found us.

Lucy
Posted 9/26/2008 1:48 PM (GMT 0)
Welcome to the forum writeleft. Does that mean you are left handed? I am. I too am sorry that your friend is dealing with this horrible disease. I wish you luck with your research. I'm sure you will find alot of helpful information here. There are many people here that will be happy to help. Your friend will be in my prayers.
Posted 9/26/2008 6:13 PM (GMT 0)
Hello Writeleft and welcome to HealingWell. I just bumped up a few of our educational posts. They have a lot of good information in them and should answer some of your questions.......they are right below this post.

Thoughts and prayers........
Posted 9/26/2008 9:27 PM (GMT 0)

Thank you...This feels like home.  What a warm, loving reception as I enter your group.  I feel immediate comfort, in what has been a short, but very painful reality.

Yes, I have read the post's. I greatly appreciate them. The truth hurts very deeply.  But, much like the other folks before me, I also HAVE to know whatever I can... I knew the end was near, but it now appears to be happening sooner, rather than later.  Infection has set it.  I have been monitoring it's progress by marking the edge of the red hot infection, and it is spreading.  The saddest part of all is that he has no medical insurance, no income, and hasn't for the last few years.  He has been living on a couch with two friends throughout this whole thing. Three of us have been pitching in for his visits at the local clinic, and getting him to and from, his food, etc.  He has lost contact with his family, including two brothers and three children, so it's just us.  His mind, which was a fortress of incredible knowledge and musical genius, has been gone for a long time.  He has such a struggle trying to get through the E.R. due to being indigent, and he definatly gets minimal treatment and released. I can hardly blame him for not wanting to go. Thak you for listening.

 

Posted 9/26/2008 11:18 PM (GMT 0)
Writeleft, You are a great person for being there for your friend. Take care of yourself.
Posted 9/27/2008 2:27 AM (GMT 0)
writeleft-

Welcome to the forum!! I think you will find this to be a wonderful place of support and education. I am so sorry you are having to watch someone go through this dreaded disease. My husband has hepC and cirrhosis of the liver....and it is tough to watch......I wanted to encourage you to do some checking with the hospitals in your area. Some hospitals, particularly if they are faith-based hpsital, usually have some type of indigent care program that your friend may be able to get into and also get follow up care through a clinic.....usually if it's a teaching hospital. We had to go that route for a while, and it really did help. In the clinic, the residents are the ones who were doing the follow up care and monitored by an attending......just food for thought. Hang in there.....will be praying for yoiu......

Mary
Posted 9/27/2008 4:23 AM (GMT 0)

WriteLeft, welcome.  I am suggesting the same thing as Mer.  For approximately 10 years I had no medical insurance, after my husband and I split and I was only able to work P/T.  All during that time, I received my care at a teaching hospital locally, including bilateral hip replacements.  The care wasn't the best, but better than nothing and I was able to walk again.  I'm now getting GREAT care at Mayo with Medicare, but also am subsidized by their charity program for whatever Medicare doesn't cover.  Check with local hospitals and see if they have charity programs for very ill patients.

When your friend went to the ER, did they give him an Rx for an antibiotic?  I suspect that the ascites (fluid in his belly) has become infected, or perhaps bacteria was introduced to his abdomen when he received the paracentesis.  At any rate, even if he is near death, he certainly should have palliative care and not made to suffer.  Try to pin a doctor down, next time he sees one, as to approximately how long he has left.  If 6 mos. or less, then Hospice can get involved--if there are no treatments given, and that may include paracentesis, not sure.  Has your friend tried to get SSI or Medicaid?  It seems to me that he certainly qualifies at this point.  Someone else can act on his behalf in doing the phone interview or paperwork.

It is good of you and the others to care enough to try to help him.


Posted 9/27/2008 4:27 PM (GMT 0)

Hello I am sorry your friend is so ill. I agree with everyone before my reply but also want to add that every hospital has a social worker that can help get state funded insurance as your friend is DISABLED and cannot work. Also try for Social security disability if time is short for him I know every state is different but they all do have some form of Medicaid and teaching hospitals can be a good alternative, any hospital that accepts state or federal money in any way  is obligated to treat him. Private hospital can refuse to give any care beyond getting him stable. What state are you in. Some states also consider over 55 eligable for elder services.

Sue

Posted 9/27/2008 8:22 PM (GMT 0)

To each of you who have responded to my post, I am so grateful.  Just to know you are there is such a relief! You have asked me a few questions which I would like to answer...

Yes, writeleft does mean that I am left handed.  I'm also the mother of two beautiful sons, one 24 and one 14.  I have a prince of a husband, and two great dogs.  I have had my own life threatening battle with malignant hypertension, 4 strokes, kidney failure, heart attack, on and on..(at the age of 43). I am about 5 years past the strokes, and going strong!  In the first year following, it was my friend Bruce who came everyday to watch over me, since I was bedridden, and my husband had to work.  So, it's just natural that I am here for Bruce now.

Med-i-cal, CMS (County Medical Services) and Social Security disability have all been applied for, but still weeks or month's away.  I only hope he can make it long enough.

Following parasentisis he was not given antibiotics, but we were warned about the high chance of infection...Hmmm, that's something I didn't think to ask for at the time.  Uggg

I have asked dr's and nurses how long he has, and I haven't gotten a verbal answer. Instead they give me that sad knowing look, and shake their heads. 

Hospice is a suggestion I will look into right away, thank you..

I hope I answered all of your questions, and look forward to learning more of your experiences.  I feel so relieved just to have found this board, you have helped immensly already.

Posted 9/28/2008 2:35 AM (GMT 0)
Writeleft......you are true blessing and a true friend to be there for Bruce!!! I am so sorry you are having to deal with all of this......I agree with Sue in that teaching hospitals will more than likely have some type of program that can help him......you do need to arm yourself with information....also, make sure he signs a medical power of attorney of some sort so that you or someone appointed can help him get through all this medical stuff, as with encephalitis, etc which is typical of liverr disease, he will not be able to handle it......

You hang in there!

Mary
Posted 9/28/2008 4:31 AM (GMT 0)

WriteLeft, thanks for your reply.  If there have been any changes since SSD was applied for, those medical records should be sent to them immediately--for example, the frequent paracentesis.  I agree with Mer that you (or someone else who knows your friend well and is trying to help him) need to have him sign a Medical Surrogate form giving that person the right to make medical decisions.  Does he have a Living Will?  If not, he needs one.  Before things get worse and he starts to have confusion from encephalopathy, these things should be done.

You have been through such a lot yourself.  I am glad you are doing well now.

Posted 9/28/2008 6:41 PM (GMT 0)
Writeleft, ok med-i-cal is the clue you might be california and that state I know has alot of private hospitals and they will just treat and street as quickly as possible a teaching hospital will be the best bet always check with the hospital for free care applications..... you may be very surprised. My s/o got all dental and dentures free at Tufts dental school because I found an obscure posting at the bussiness office on the wall. He qualified so we applied for the grant. Some hospitals have whats call a "Hill Burton Act Policy" which will help with hospital expenses. His care needs a priorty over the money part and it takes always asking..... not stop for help..... pharmacies...... drug companies...... PPA........ hang in there. I now have 3 three ring binders, one for medical updates, labs hospital stays etc. One for daily progress notes which helps me to line up my questions and concerns with DR one is for insurance issues and who I already have tried whether successful or not.
Sue
Posted 9/28/2008 7:12 PM (GMT 0)
Is Loma Linda a teaching hospital?  I know it is tops in transplants.  Many years ago, when I worked for Children's Medical Services here in FL, we would send young children there for transplants.  At the time, they were one of the few places doing living donor transplants (children only.)  I remember one child in particular who we sent there for a transplant.  Unfortunately, the liver failed some months later.  Again we sent her back and the second liver "took" and she did fine.  I recall that we used a free medical airplane service and that she also had Medicaid.  CMS paid for part of the services, as well.

Posted 9/29/2008 7:19 PM (GMT 0)
Unfortunately, Bruce is back in the hospital today for another parasentisis. I am on my way there right now, just to sit with him, and hopefully crack a few good jokes. Thank goodness the sense of humor is still there between us.

Besides that, I have a call into Hospice-expecting a case worker to get back to me today. I will obtain the medical power of attourney paperwork when I get to the hospital. Again, thank you for all your loving advice.
Posted 9/30/2008 1:29 AM (GMT 0)
Writeleft.....I am so sorry to hear this news. Will continue to pray for you all.....you are such a good friend!! Keep us posted!

Mary
Posted 9/30/2008 3:41 AM (GMT 0)
Writeleft, I will continue to pray that Bruce is able to get the care he so much needs and that he will be on his way to a transplant.
Posted 10/2/2008 11:14 PM (GMT 0)
Dear Friends,

Thanks for the warm thoughts and prayers. They mean more to me than I can express. The last fews days I have been at the hospital with Bruce all day, then rush home to take care of my own sweet family. 

He has been hospitalized for three days now, and his diagnosis is now hepatic encephalopathy.  His doctor has the bedside manner of a cobra. He did appoint me medical power of attourny, and from there I was able to secure his much needed County Medical Services.  I even was able to call one of his long lost brothers, and they have talked.  I feel good about all that.

Again, thanks for listening...

 

Posted 10/3/2008 3:11 AM (GMT 0)
Writelft......so sorry this is so stressful!! Doctors can be very short tempered and come across as not caring sometimes! I had that very conversation with someone today, and they pointed out to me that maybe it's because they are too focused. Unfortunately, I sometimes felt (before we got our transplant docs) that because of the disease, is is a "stereotype" or "label" and unfortunately it happens. Hoping they gets the meds to get the encephalopathy under control......lactulose will help, but with my husband's last hospitalization from the encephalopathy they also gave an antibiotic type medication that really seemed to help.

That's really good that he and his brother have talked....maybe some healing will take place there. You hang in there and make sure you are getting plenty of rest, too!!

Mary
Posted 10/3/2008 4:09 AM (GMT 0)
Writeleft, I am glad to hear that Bruce was able to talk to his brother but am very sorry that he is not doing well. I second what Mary says. You take care of yourself. I will continue praying.
Posted 10/5/2008 11:01 PM (GMT 0)

A few days have passed now, Bruce is still hospitalized.  While he has been there, his two "roommates" have decided they do not want him to come back. The hospital staff has told me that his release would likely be to a nursing home, which upon deeper investigation turns out to be the county indigent care facility.  It is located very far from our area, and to my understanding is the true end of the road for it's inhabitants.  

Posted 10/6/2008 12:21 AM (GMT 0)

writeleft, please look into a halfway house his chances would be better if he becomes fairly capable of participating in his own care..... those indigant care places are not the place to be! He might be better off in a hospice care facility if he cant get a transplant. I so feel your pain dealing with this.

Sue

Posted 10/6/2008 4:30 AM (GMT 0)
WriteLeft, I agree with Sue.  Seek out another facility.  I am glad you were able to get the Medical POA.  You are indeed being a good friend and doing what you are able to.  I'm sure Bruce appreciates that you are there for him.  Be sure to take care of yourself, too.

Posted 10/7/2008 8:56 PM (GMT 0)
Today I gently released myself from Bruce's medical POA, as I have done what I can to help out a friend.

From here, it's going to be up to him. I greatly appreciate your help through this...I THANK YOU.
Posted 10/7/2008 10:01 PM (GMT 0)
Sue, Connie, Mary, Butterflythree, Pink Grandma,

I will be posting on your boards, if you don't mind... I have other medical, as well as life experiences, that also need sharing - like malignant hypertension, stroke recovery, kidney disease, relationship health, and now a little hard truth about ESLD... WOW

I feel good when I can help someone else, like I know you do too. In fact, I found this board while I was first posting on another... This is the one that I feel is for me, if that's ok with you.

I hope I will be seeing each of you on the boards!

Janet
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