TRYING TO DEAL WITH THE MANY SYMPTOMS OF ESLD

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christinacalvo30
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/11/2009 10:12 AM (GMT -7)   
Well hello everyone :-) .  I was recently sent a link to this forum from my dads girlfriend.  He was diagnosed with ESLD, secondary to hepatitis C, ~ 4 months ago. He will be 53 yo in 2 days.  Im having a very hard time dealing with and trying to make sence of all the symptoms he is going through.  Im a nurse and I'd like to think of myself as educated but I found Im just as lay as non health professionals when it comes to this.  I live over 2000 miles away from him and I HATE it.  There is not much I can do over the phone but Im doing all I can.  Im hoping to get some encouragement and support from this site. 
 
My dad was diagnosed years ago with bipolar disorder as well.  He is having a difficult time with this his new diagnosis and Im having a hard time determining if his mental state is from the bipolar or the ESLD.  He is taking meds for this however he goes though stages of depression where he just wants to give up and other days we cry together and he says he'll fight with every thing he has.  Im so confused and I cant pinpoint why everyday is a rollercoaster of emotions.  He has always been a sharp man but his ability to be rational and make sound decisions comes and goes by the day.  Its almost like he has dementia.  I understand the ammonia levels and other electolyte imbalances can cause this but will this ever get better when things are better controlled?
 
My dads edema was causing him serious breathing problems and he has since underwent the operation in which the lining of the lungs were sealed by talc to prevent fluid from filling the plueral space.  This was successful but now his abdomen looks like a basketball(I've seen through e-mail pics) His belly button is herniated and he is starting to have difficulty breathing again.  I spoke with him on the phone today and he could hardly talk and was panting like a dog.  I made him go to the ER 3 days for a theraputic paracentesis (TAP) and they sent him home saying they dont do that because it will just fill up faster and since he was having no difficulty breathing (at that time) it was not needed(which I know is b.s.)  They increased his lasix and spiractalone, put him on a NO sodium diet and sent him on his way.  Its now 3 days later and he is in respiratory distress.  He is so uncomfortable, cant sleep, get up and walk or even talk.  Im afraid the pressure in the abdomen will cause the talc seals to break...Am I nuts?  Not to mention its theraputic to give him comfort and some quality of life.  Being confined to bed is no life...I understand that the disease cannot be treated but I know the syptoms can.  I spoke with his PCP and will see him tomorrow re: this.  Hope all is well through the night.  Im hoping this new diet and med regimen will allow him to live a half way normal life.
 
Everything is happening at such a slow pace for my taste.  Finally after 4 months he is going to see a gastrenterologist for this.  The closest Hepatologist is 6 hours away shakehead  .  I want to get him on the transplant list and I've even considered being a live donor and giving him part of mine (I am a blood match).  But even this I know very little about.  Im trying to help him through this but being so far away from him there is only so much I can do.  I feel helpless cry Thank god he has a very supportive girlfriend who is sticking right my his side.  God bless you Judy smilewinkgrin !
 
Im looking for some advice on how to be more proactive about the future and what to expect for today.  Im open to it all.  Thanks so much for reading.
 
Sincerely,
Christina  
 
 
 
 
 I am Judy and everything Christina wrote is what we are going through.  I can tell you he almost died on me on the way to the hospital on one of his er visits, his right lung was completely filled and he was gasping for breath and he did not know where he was.  He had the talc seal done after that and was sent home and had to go back and have it done 3 more times till they let him come home.  He came home Christmas Eve Eve and now we are dealing with the acites.  He is on the water pills and only problem is that they make him so lathargic.  I plan to take him to the Dr at 11:15 AM and will let you know what he says.
Yes I did show her this site I was reading it and so amazed on how wonderful every one is here.  I joined too

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/11/2009 2:02 PM (GMT -7)   
Now, I'm confused as I'm sure I answered Christina's post.  Did you just copy it to a new post, Judy?

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


texrtst
New Member


Date Joined Feb 2009
Total Posts : 7
   Posted 2/11/2009 2:51 PM (GMT -7)   
yes sorry did not see this one. You can go ahead and delete mine and keep hers. :)

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/11/2009 3:14 PM (GMT -7)   

Hello Christina and Judy and a big welcome to HealingWell.   Judy I take it you are the wife correct?   We won't delete the post.  Somehow Judy your post is incorporated into Christina's post.  How did you do that one?

Anyways we are glad you found us but sure wish you didn't have the need to.  This disease is a roller coaster ride that's for sure.  But each ride is a little different for each patient.   

Hopefully he can get to a GI doctor very soon.   Too bad a  Hepatologist isn't closer.   My husband's GI was almost useless.  So hopefully his will be better educated than my husband's. 

Please continue reading over the older posts.......They are very educational.     

Lactulose can control the encephalopathy but if he is prone to infections he may need to be on Xifaxan.  When any infection is present it's almost impossible to control the encephalopathy.  Once they put my husband on the Xifaxan he had no more problems with the encephalopathy.  And yes he still had to take that nasty o'l Lactulose.
 
Hope your journey gets a little easier once you get educated on liver disease.  
 
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.


christinacalvo30
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/11/2009 5:18 PM (GMT -7)   
Hi Pink Grandma.  Thanks so much for your kind words.  I actually posted my first one on an old thread and hep93 instucted me to copy and paste into a new topic.  So, I copied Judy's along with mine. smilewinkgrin   I think I understand how this forum works now.
 
Well My dad was admitted back into the hospitol today thank god!  He is having his belly drained as we speak.  He said it was painful but worth every bit.  He had a fever today of 100.9 which I suspect to be pneumonia.  With his ascities, he has not been able to take deep breaths nor get out of bed and this is a perfect situation for bacteria to grow in the lungs.  I knew it would come to this and Im unsure why I knew this and they didnt shakehead   This is how his care has been all along.  I have to dictate from miles away over the phone what should be done for him.  This is NOT my job.  Dont get me wrong I want to be a part of his care but I shouldn't be the one telling them how to treat him.   It seems like they are way behind in the times.  
 
I'm a little frustrated but relieved at the same time.  He is able to speak and isn't grunting when he breaths anymore and for that I am thankful.  Only time will tell.  I pray for him everyday.  I am an only child and he is my only daddy.  I love him so much and I dont want to loose him cry .

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/11/2009 5:24 PM (GMT -7)   
Christina, I'm so glad that he is now doing better.  No, you shouldn't have to be the one instructing them what to do, but it sounds like they are not really experienced with this type of patient...so do whatever you can.

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


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 2/11/2009 7:48 PM (GMT -7)   
Christina, Welcome to the forum. I am so glad that you found us. As you can see, there are many caring people here that understand just want you are going through. I am so sorry that your dad suffers from this disease. It is such an unpredictable one. I'll be praying that your dad makes the transplant list.
Butterflythree
 
There is always hope!


christinacalvo30
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/11/2009 8:00 PM (GMT -7)   
WOW! All you guys are so great...Im happy Judy and I found you too. I will keep you all posted on his progress. If you know of anybody on here that I would benefit from talking to about some of the questions I mentioned above please let me know. I appreciate you all!

With Much Love,
Christina

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/11/2009 8:15 PM (GMT -7)   
Christina, read some of the educational posts by Shelly, regarding various aspects of liver disease.  She is a nurse and lost her mother to liver cancer, so she is both knowledgeable and compassionate, having "been there."

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 2/12/2009 9:55 AM (GMT -7)   
I am so happy that he got drained. I couldn't understand why he wasn't drained earlier, but with no personal experience with it I didn't feel competent enough to even respond to that part of your posts. My husband's ascites was only controlled by meds and fluid/sodium restriction thankfully. There are a quite a few others here that themselves or their loved one has had to have it done a number of times.

We do have the best internet support group for liver disease on the net.........if I do say so myself.smilewinkgrin Our members are the greatest. (Now including you two.)

I agree with Connie, the more you can be a part of his healthcare the better. Even the elite hospitals sometimes drop the ball because they just don't have the workforce to keep up with the demand. And once they know that you are well educated in this disease they are apt to give better healthcare..........so Christina.........flaunt your nursing career as needed. It will keep them on their toes once they know that you are a big part of your fathers healthcare. And Judy continue to educate your self and ask them plenty of questions...write them down if you have to. I worked for me. My husband's hepatologist got to the point of asking me where's your note pad....I know you have a list of questions. It's great that there are 2 of you involved in his healthcare. Most are not that lucky.

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.


christinacalvo30
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/15/2009 12:54 PM (GMT -7)   
Well dad is home and sounds much better. He is refusing to use his incentive spirometer and do his breathing tx's because of the pain with the umbilical hernia. This pain is what caused him to take shallow breaths which ultimately led to pneumonia. I carried twins full term and also got an umbilical hernia which a month after I gave birth I had it repaired. He needs to get this repaired as well so he can move around and breath freely because he will wind up right back as square one with pneumonia again. Is there anybody who has had this with ESLD and had it repaired? Just wondering because I will call his Dr tomorrow and insist on him getting it done. He said that they said they wont but I just think he he will say anything to be away from that hospitol.

Christina

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/15/2009 2:07 PM (GMT -7)   

Christina, I know there was one person here whose husband had a hernia that the docs wouldn't repair because of his medical condition.  Two months after I had the rt. lobe of my liver removed, due to cancer, I developed an incisional hernia.  I had to wait awhile to recover from the first surgery before he would repair it.  Then it came back about 6 mos. later and I had it repaired again.  This time, it held (so far--knock wood.)

You can call his doctor to discuss it, but don't "demand" that it be repaired until you know if your father is medically stable enough to have the surgery.   wink    I'm glad that he is now at home.


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

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