kidney failure along with liver failure

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sad in oc
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/17/2009 5:13 PM (GMT -7)   
My brother has been hospitalized for nearly a month now, diagnosis liver failure. This past Sunday a kidney dr. said he may need dialysis as his kidneys are now failing. Indeed, he has had dialysis twice now in two days. When he checked in to the hospital he was confused but now he is never alert enough to even acknowledge you are in the room. He has not improved in a month in fact he's worsened. Has anyone experienced this? His nurse today said dialysis is exhausting. Might we see some type of improvement?
Thanks

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/17/2009 6:27 PM (GMT -7)   

 

Sad,

 

I'm sorry to hear that your brother is in such shape.  I'm not a doctor, but I had a very similar experience with my husband when he was hospitalized (over 75 days total).  He just received a liver transplant January 21st.

 

In November, his ascites (fluid) was so bad it entered his chest cavity and crushed his right lung (pleural effusion).  They tapped 4 1/2 liters of fluid off the chest (Thoracentesis).  Then they installed a chest tube and restricted his fluids.  They also had him on heavy doses of diuretics.  Over the course of the next 6 days, he became more confused until finally he and slipped into hepatic coma.  He was way too dried out.  His urine output nearly stopped.  I grew very concerned about his kidney function.  He lost at least 25 lbs that week.

 

I had a temper tantrum and chewed out a total of 7 doctors demanding the chest tube be removed.  It was during my tyrant that I met the director of transplantation.  He ordered the chest tube removed and immediately started him on saline drip.  The diuretics were stopped.  Within 3 hours, my husband regained consciousness.  It was a very close call.  We spent the next couple of months in the hospital trying to determine a middle ground and keep him stable.  The diuretic doses were constantly being adjusted.  Too much fluid and his blood pressure would drop to a point where they couldn't give him diuretics.  Too dry and the encephalopathy (confusion) would increase.

 

He ammonia levels were monitored regularly.  When they were high, the hepatologist would order Lactulose enemas every 8 hours.  The quickest way to bring down the ammonia level is through bowel movements.

 

Your brothers condition may be far worse than my husband's was.  But your story sounds frighteningly familiar.  Don't be afraid to ask questions or have them explain his condition to you. 

 

Hope this helps.  God bless you.  You and your brother will be in my prayers.

 

Penny

 

 

 


sad in oc
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/17/2009 6:52 PM (GMT -7)   
Penny,
It is encouraging to hear that your husband rallied after so many days in the hospital.
My brother continues to take the lactulose orally. He was having uncontrolled bowel movements for days, now he is not having many. Do you recall what your husbands ammonia levels were?
I know my brother has been on diuretics, as he is also battling tremendous swelling and infection from a broken ankle with an open wound.
He does not have ascites. I will check tonight if he is on a saline drip.
Was your husband extremely jaundice? What about his diet while in the hospital?
I hope your husband is feeling great after the transplant. I am not sure if my brother would ever be a candidate for a transplant as I am not familiar with the criteria.
Thank you for sharing your story with me. It gives me a glimmer of hope.

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/17/2009 7:35 PM (GMT -7)   
Sad,

Yes, my husband was extremely jaundice. The whites of his eyes resembled a bright yellow highlighter. His urine was dark but improved with fluid intake. When the fluids are restricted and the Lactulose causes very loose stool, not to mention diuretics, dehydration is always an issue. Not only was my husband getting Lactulose enemas, but they were also double dosing him orally. He was getting 30ml twice a day.

My husband's ammonia levels would flucuate up and down. I could tell when they were high because of the level of confusion. I became very involved in his treatment. A family member was with him 24/7. I was usually there 14-18 hours a day. The family would relieve me to go home and shower/rest. I believe his highest level was 122.

Diet was a whole other issue. My husband suffered esophageal varices (bursting veins in the throat) and nearly bleed to death in 2007. He underwent several banding procedures (veins clamped) which caused a great deal of scaring. This made it difficult for him to swallow. He ended up having a feeding tube installed November 19th. So he was receiving his nutrition through the tube in his stomach. In your brother's case, I would imagine they are restricting his fat and sodium intake. They were giving my husband a high protein high fiber formula because he was loosing muscle mass. Of course, this also increased the ammonia, so more Lactulose. It's a vicious cycle.

Over time, I gained the respect of the doctors. They knew I was constantly monitoring his condition. They on the other hand were visiting him once a day. I was keeping track of his nutritional intake, bowel movements, urine output, and physical therapy. I would provide the doctors with a complete 24 hour report on his condition. He was in the hospital so long that I quickly learned to judge the ammonia level by his confusion. If he would get too confused, I would pitch a fit and they would adjust his fluid/diuretics to get him back to a comfortable state of clarity. If he was retaining too much fluid, again I would pitch a fit and adjustments would be made. It was very frustrating because he would go from one extreme to the other. I couldn't understand why it was so difficult to find a happy medium. They finally figured it out around January 9th. We managed to keep him stable until the surgery.

Since your brother has alcoholic cirrhosis, I believe he must be sober 6 months before he would be transplanted. This must be documented through an organization such as AA. This may vary from center to center, but I would certainly ask if I were you. Doctors are very busy and their visits are usually very short. Write down your questions so you don't forget them. Ask the "what if" questions. Insist on answers and find out what their plan of action is. Be the squeaky wheel. It could mean all the difference.

I'm also very concerned about your brother's infected ankle. I hope they get the infection under control quickly. I would imagine his is on IV antibiotics.

Never give up.

Good luck to you both.

Penny

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/17/2009 7:39 PM (GMT -7)   
P.S. My husband has been eating solid food and taking his meds by mouth since he got out of ICU after the surgery. They intend to remove the feeding tube within the next few weeks. I continue to suppliment his calorie intake with the tube. He is 6' tall and currently weighs 142 lbs. His healthy weight is 184 lbs. He has a long way to go to regain his muscle mass. But I'm confident we will get there.

Penny

sad in oc
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/18/2009 12:19 AM (GMT -7)   
Penny,
Your posts continue to encourage me. I spent a few hours with my brother tonight and he was moderately more alert than he was this afternoon. I know he has quite a few drugs available to him for pain. He is given ativan, atarax, benedryl on a regular basis for agitation and itch. I cant help but think these are not great for him. I hope to approach his case worker tomorrow and ask some questions. I am beginning to feel they are not treating him aggressively enough.
More later.

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/18/2009 3:59 AM (GMT -7)   

Sad,

 

I am back to work these days.  My Sister-In-Law is staying with us to help take care of my husband Harvey.  I don’t get a chance to check in on the forum except in the evenings. 

 

I’m glad you are encouraged and getting involved.  It’s important for the family to get behind the patient.  Let the doctors know how important he is to you.  This goes a very long way in their willingness to make him well again.  Your brother must also demonstrate his will to live and give up alcohol. 

 

A transplant candidate/recipient needs a great deal of support to ensure all doctors appointments are met, medications are taken appropriately, vitals are reported, etc.  It’s a very involved process and one that has no end.  Anti-rejection medication must be taken for the rest of the patient’s life.  Rejection can happen years after transplant, so a patient must be vigilant for any signs of rejection and report them immediately to the transplant team.  So the more family supporting your brother, the more confidence the team will have for a positive outcome.

 

Depending on the extent of his cirrhosis, they may be able to stabilize him enough to be released.  He would then need to join an organization such as AA to get his sobriety documented.  Of course he would also have to meet with the transplant team regularly to be evaluated and have his condition monitored.  But let’s not get too far ahead of ourselves.  Bottom line, he is going to need a great deal of support.

 

First and foremost, they must get his infection under control and address his kidney function.  I don’t know that much about dialysis, but I do know that the kidneys can “wake up” again and start functioning depending on the extent of the damage.  Get to know his nurses.  Ask them for their opinions.  They can help guide you in what questions to ask the doctors.  There are some very intelligent nurses out there and they tend to be more direct that the doctors.  And unlike the doctors, they are on board 12 hours a day.  The nurses can be your greatest ally.

 

I have to get ready for work.  I wish you the best of luck and will continue to pray for your and your family.

 

God Bless.

 

Penny


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/18/2009 11:39 AM (GMT -7)   
Penny, I just want to thank you for being such a source of information and comfort to others, while you still have so much on your shoulders.  You are very much appreciated here!

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


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/18/2009 3:26 PM (GMT -7)   

smilewinkgrin   I'd never turn my back on my friends.  The people of this forum are wonderful and have been such a great source of support to me in my darkest hours.  The least I can do it pass it along.  Yeah, I'm busy, but I'll do what I can.

Love ya'll!

Penny

 

 


sad in oc
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/18/2009 4:20 PM (GMT -7)   
Hep93,
I found this forum with a google search and what a blessing it has been to me so far. Especially penny's posts. I am ready to help my brother fight when I had all but given up hope.

Glad (if even for a moment) in OC

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/18/2009 5:56 PM (GMT -7)   
I agree that the people here are really wonderful.  So everyone, give yourselves a pat on the back!  It is the people that make this forum so great!

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 2/18/2009 9:40 PM (GMT -7)   
Penny, I also want to thank you for all the education you are providing us with. You have become very knowledgable with dealing with this disease. I continue to pray for Harvey. I hope he is still doing well.
Butterflythree
 
There is always hope!


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/19/2009 2:46 AM (GMT -7)   
Thank you all.

Harvey is doing well. It's going to take awhile to get his strength back, but we'll get there. The greatest joy I have is seeing him realize that he has a second chance. Most of his friends avoided him when he was really sick. They couldn’t bear to see him in such sad shape. They are now calling constantly and encouraging him. He is really enjoying the attention.

I got this education from the school of hard knocks. I’m so grateful that God gave me the strength to see this through. I’m also grateful for the support I got from this forum. ESLD is so complex and it is difficult to talk with people who are not experiencing it. They want to help, but they simply have no idea what you’re going through. I kept so much bottled up and it was a heavy burden. The forum allowed me to vent and keep my focus on the fight. The support was invaluable.

We are like a little army battling a formidable foe. There are many casualties and each one breaks my heart. I feel your pain. For there by the grace of God go I.

(((HUGS)))

Penny

sad in oc
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/20/2009 12:54 AM (GMT -7)   
Thank you for the opportunity to have the site to visit. My brother died this evening from complications of his liver failure. I was ready and encouraged to rally the troops to sit by his side 24/7 but the effort did not come to fruition. Many did come to say their goodbyes. I wish those of you still fighting the fight the very best of luck and peace.
I only wish I could have done more for my brother.

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/20/2009 3:42 AM (GMT -7)   

Sad,

 

I'm so sorry.  I know you will miss your brother.  Please don't second guess yourself.  You were there for him when he needed you.  Don’t dwell on the circumstances of his passing.  God has a plan for each of us.  It’s one that cannot be changed and is beyond our comprehension.  We are left to grieve those we loved and lost.  Each passing reminds us how fragile life is. 

 

Take comfort in knowing that your brother has gone home and is free of his suffering.  Be grateful for the time you had with him on Earth and cherish the positive memories.  Your love for your brother will keep him alive in your heart until you meet again as promised by our Lord.

 

You’ll miss your brother terribly.  Please know that we will be here for you if you need us.  We all share the pain of your loss. 

 

You’re in my prayers.  My God bless you.

 

Sincerely,

 

Penny


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 2/20/2009 6:39 AM (GMT -7)   
Sad, I am sorry for the passing of your brother and I know the pain you feel. Penny is right, he is no longer suffering and finally at peace. You were a tremendous asset to him and his biggest comfort. Second guessing is human nature and we are all guilty of feeling those insecure feelings of what else we should have done. You have done everything you could have to keep him here and help him survive but only GOD can take us home when it's time. We mourn the loss of our loved ones because we miss them so much. Try to dwell on the good times, the funny times, the loving moments you shared with him, and not the sad times. It does help. Bless you and take care.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/20/2009 8:28 AM (GMT -7)   
(((Sad))), I am so sorry. I know you are feeling terribly sad right now, but you were there for him when he needed you. That's what really matters. He knows how much you love him. Do not feel that you didn't do enough......you did. You made his last days full of love......the rest was up to God.

Take care and you welcome to come back whenever you're able to.....

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 2/20/2009 12:30 PM (GMT -7)   

Sad, I join the others in offering my sincere condolences.  I know how much you must be hurting right now.  Please know that you are welcome here anytime.

Gentle hugs,

Connie


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 2/21/2009 9:42 PM (GMT -7)   
Sad, I too am so sorry to hear that your brother has passed away. I will be praying that God comforts you and your family.
Butterflythree
 
There is always hope!

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