liver transplant

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Desi123
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Date Joined Jan 2010
Total Posts : 12
   Posted 1/6/2010 8:32 PM (GMT -7)   
My brother has cirrhosis of the liver and is currently hospitalized in Tulsa. He has severe ascites (about 100lbs of fluid) but they cannot drain it because the doctors say the fluid is between the tissues and not in one particular pocket. He runs fever, feels cold all the time and has a weeping rash on his legs and arms that soak the bed or chair where he is sitting. The doctors have quit giving him diruetics because his kidney function almost stopped. Also his blood pressure is very low and is Meld score is in the twentys. My brother gets SSI and Medicaid. He has no insurance. We have tried to get him evaluated for a liver transplant but he has been denied the opportunity by the Baptist Integris Hospital in Oklahoma City. Does anyone have any ideas on how he might be able to at least get on the waiting list for a liver transplant?  We are running out of time. Thank you so much, Desi

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 1/6/2010 9:14 PM (GMT -7)   

Desi, welcome to the forum.  I am sorry that your brother is so ill and in such a predicament.  Medicaid IS insurance and some hospitals accept it.  You need to seek out other transplant centers near your brother.  One of them should be able to do an evaluation to see if he qualifies for transplant and can be put on the UNOS list.  That is the only way to get on it, as far as I know.  Perhaps others here who have been through the transplant process can give you more solid suggestions.

Hugs,

Connie


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


Desi123
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Date Joined Jan 2010
Total Posts : 12
   Posted 1/6/2010 10:02 PM (GMT -7)   
Thanks, Connie for your response and the information.  My family and I  have been so concerned about my brother because of the severe ascites (and apparently there is nothing to be done except diet and restriction of liquids- hasn't helped much) and this weeping rash that no doctor can explain. The GI doctor told us today that they want to discharge Mike because they say there is nothing else they can do for him and mentioned Hospice. But in some ways he does not seem as severe as some of the patients mentioned in these posts.  Has anyone else heard of ascites like this or a weeping rash?  God Bless You All, Desi  

shadowsghost
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Date Joined Apr 2008
Total Posts : 489
   Posted 1/7/2010 8:50 AM (GMT -7)   

Desi, I am sorry Mike is having to go through this, that weeping rash is actually the fluids seeping through his skin. With that much fluid in his body it has to leave some how. It does surprise me the Dr didnt suggest that as the possible reason. My husband had the same thing happen to him and the Drs did a TREAT AND STREET he was out west at the time and the hospital didnt take state insurance so they did what they had to do just to get him at least able to walk from wheelchair to car door. Please get on the phone and call all hospitals you can find that even have a good liver Dr that will take his 2 insurances, you can try to stall his discharge by saying you need to get things in place for him at home to be in a SAFE environment. Medicare will pay for Visiting nurses to come in.....demand them to write the order, maybe even the state insurance will pay, one of them will. Once Hospice comes in they just do comfort measures so you dont want them if there is hope. Will write more later.

Sue


When I started counting my blessings my whole world turned around.


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 1/7/2010 11:20 AM (GMT -7)   

Sue, if he has SSI and Medicaid, he doesn't have Medicare.  Probably too young and too little work history to qualify.

Desi, I also had the weeping in my calves when I had extreme ascites and edema.  The rash is probably just from the irritation of the skin always being wet, particularly if it's in folds of skin.  He could try using Desitin Ointment such as used for diaper rash.  My fluid problems were handled with diuretics and salt restriction. 

I agree that your brother needs to see a hepatologist, and also that you need to start looking for transplant centers in OK.  I also agree that Hospice shouldn't be called just yet.  Try to get a 2nd and 3rd opinion first, and possibly evaluated for transplant.

Hugs,

Connie


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


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 1/7/2010 8:21 PM (GMT -7)   
Connie, oops my mistake I thought he had medicare and medicaid, doug had both but he had to be disabled 2yrs before he got it. Sorry and I know different states have different coverage on the medicaid part. I know Mass is very generous with allowable coverage even covers transplant, transportation and home care. Some states your lucky to find a Dr who will take it.
Sue
When I started counting my blessings my whole world turned around.


Desi123
New Member


Date Joined Jan 2010
Total Posts : 12
   Posted 1/7/2010 8:50 PM (GMT -7)   
Rick and Sue, Thank you so much for your comments. It helps us in our decision making. The problem is in Oklahoma the only Hepatologists are in Oklahoma City and we have not been able to get Mike transferred to a hospital in Oklahoma City as they will not accept him. I am sure it has something to do with him only having Medicaid. The hospital where he is now says his prognosis is poor and want to send him home with Hospice but I think it is just because they do have the expertise to know how to treat him. It seems like we all cry every day to see him in this condition but we are learning to trust in God and it certainly helps to have  good friends like all of you. Thank You and God Bless!  Desi

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 1/7/2010 9:03 PM (GMT -7)   
Desi call the hospitals to see if they take his insurance and see if they have a charity allowance. Up here we have sliding scales if you dont have insurance plus a fund that helps to pay hospital bills but it wont cover Dr portion of the bill. What if you had just brought him to their ER are they allowed to turn him away? Contact a hospital social worker! Someone needs to have his Medical Power of Attorney done too, then that person can speak for him also when he cant. Now I am going to say what I say to my adult girls.... Stop crying, square your shoulders, dig in......take no prisoners, leave no stone unturned. If you have a support system give them all a job.....whether making calls or research anything busy hands help you too.
Sue
When I started counting my blessings my whole world turned around.


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 1/8/2010 1:57 PM (GMT -7)   
Prior to my getting a liver transplant last July, I was hospitalized because I had 25 pounds of fluid in my legs. It couldn't be drained. They did give me lasix, but an albumin IV helped the lasix get rid off the fluid as well. I shed 27 pounds of fluid in 6 days. Three days later I got a liver. My MELD score had jumped from 18 to 24 in 2 weeks. Ask about albumin. **David**

Desi123
New Member


Date Joined Jan 2010
Total Posts : 12
   Posted 1/9/2010 7:47 PM (GMT -7)   
Thank all of you! Yesterday was a hard day because we had the hospital social worker and the doctors pressuring us to get Mike discharged to nursing home or hospice. The doctor said Mike's kidney function was so low that now he will probably need both a liver and kidney transplant and the doctors are so discouraging about us even thinking about a liver transplant. Everything is doom and gloom. Mike's daughter is a registered nurse and she said the lab work shows Mike kidney function as chronic but not kidney failure. When Mike went into this hospital his kidney function was fair but after he was admitted for awhile and they kept giving him diurectics (even though it was ordered to be stopped) his kidney function became worse.  They now say Mike's meld score is in the thirty's. His rash is better since they gave him a steroid ointment on it and his swelling in his legs and arms has gone down some. They want to discharge him but they keep ordering tests and last night they gave him two pints of blood. Today he felt better although he has had some diarrhea. Mike has decided he would like to be discharged and go home for awhile until we can figure out what the next step is. We are going to try and get home health and see if we can do some of the things you all are talking about like calling hospitals and trying to get him to a  heptologist. Mike still has fight in him although not much faith in doctors. We have all been on our knees a lot and know it is going to take a miracle from God to get Mike well...  Thanks again, Desi

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/9/2010 9:08 PM (GMT -7)   
Desi, absolutely get on the phone and talk to some transplant centers.  That is the best hope for your brother right now.
 
At one time, a member posted all the transplant centers by area, but I'm not able to find that post right now.  I'll try again tomorrow.
 
Our thoughts and prayers are with all of you.
 
Hugs,
Connie


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

Post Edited (hep93) : 1/9/2010 9:31:29 PM (GMT-7)


Desi123
New Member


Date Joined Jan 2010
Total Posts : 12
   Posted 1/10/2010 2:22 PM (GMT -7)   
Thanks Connie for all your help. I am really glad I found this forum because it helps me and my family to know we are not alone. Like I said in my last post, Mike's kidney function is down and the doctors are quite pessimistic about that. Do any of you know anything that will help increase kidney function? The doctors took Mike off the direutics, prescribed Sandostatin, limit his liquid and salt but still his kidney function is poor. I know some of you are seeing specialists and wondered if you ever experienced this problem and came out of it?  God Bless You All, Desi

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/10/2010 4:08 PM (GMT -7)   

Desi, I found the post with the transplant regions.  Your brother's consists of OK and TX.  He may have to travel to TX.

TRANSPLANT REGIONS in the US

The states comprising each region are as follows:

  • Region 1: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Eastern Vermont
  • Region 2: Delaware, District of Columbia, Maryland, New Jersey, Pennsylvania, West Virginia, Northern Virginia
  • Region 3: Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi, Puerto Rico
  • Region 4: Oklahoma, Texas
  • Region 5: Arizona, California, Nevada, New Mexico, Utah
  • Region 6: Alaska, Hawaii, Idaho, Montana, Oregon, Washington
  • Region 7: Illinois, Minnesota, North Dakota, South Dakota, Wisconsin
  • Region 8: Colorado, Iowa, Kansas, Missouri, Nebraska, Wyoming
  • Region 9: New York, Western Vermont
  • Region 10: Indiana, Michigan, Ohio
  • Region 11: Kentucky, North Carolina, South Carolina, Tennessee, Virginia

Regarding kidney function, I don't know what else can be done.  He may have to undergo a kidney transplant, also.

It seems you are right about hepatologists only being in OKC.  That's unbelievable!  How far is he from OKC?  How about a GI doc where he lives?  Just thinking about getting him some ongoing care.  I suggest you look into transplant centers in TX and see if there is one that is willing to evaluate him.  Then check into Angel Flight for transportation.  We have another member (Harpazomeup) who is going through something similar with her brother.

Hugs,

Connie



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

Post Edited (hep93) : 1/10/2010 4:27:10 PM (GMT-7)


Desi123
New Member


Date Joined Jan 2010
Total Posts : 12
   Posted 1/10/2010 6:13 PM (GMT -7)   
Connie, you are truly an angel sent from God. Thank you so much. We feel like we have to keep fighting no matter how bleak the numbers look. Thanks again, Desi

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/10/2010 7:21 PM (GMT -7)   
Desi, I just wish I could be of more help.
 
Continued prayers,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 1/10/2010 7:45 PM (GMT -7)   

Desi, I live in New England and our area it is not unusual for a persons MELD to be as high as 30 before a transplant and along with that number can be some or total kidney failure. So it is not unusual also for them to do a double transplant of a liver and kidney at the same time. I was told this happens when the kidneys are in total failure and person is on dialysis but if transplant is before this the kidneys are sometimes rested with dialysis after liver transplant and they will recover. So I would guess that he is not that bad yet. Stay as positive as possible and keep searching for help...... it may be out there!

Sue


When I started counting my blessings my whole world turned around.


Desi123
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Date Joined Jan 2010
Total Posts : 12
   Posted 1/11/2010 5:44 PM (GMT -7)   
Sue, Thanks for your post. We have not given up yet and neither has Mike. Today I wrote a letter to our US Congressman and Senator to explain our situation and how having no insurance has affected Mike's care and how we are needing help to get him into a transplant center. No person should be denied specialist care when they are dying just because they don't have insurance. I don't know if it will help but I had to try. Mike is going back home with nursing care (not hospice) tomorrow and hopefully that will give us time to keep working on getting him into a transplant center. I will keep you all posted.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/11/2010 7:11 PM (GMT -7)   

Good for you, Desi!  Continued prayers.

Hugs,

Connie


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


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 1/12/2010 11:02 AM (GMT -7)   
Desi, Ask the home nursing if Mike can have the home monitor. You need an active phone line to plug into and it has a BP cuff, scale and also O2 finger thing lol... forgot what it was called. The machine will tell you its time for vitals then he stands on the scale for weight then you slide cuff on put the finger piece on it does all the work. Then it sends info to the nurses, they call you with any concerns. I hated the thing yelling at me in the AM but it was a life saver. Also he maybe able to get the med alert machine, the help I have fallen and cant get up. Your Visiting nurses will be able to request that stuff. They r the ones that got it for us and also wheelchair etc. Use them for whatever you can.... they know what his state ins will cover.
Sue
When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/12/2010 2:45 PM (GMT -7)   

Sue, do you mean a pulse oximeter?  You are right about home health care.  Desi, they can get you anything you need, as Sue mentioned.  Even a hospital bed if he needs one, and a bedside commode.  Anything that makes his care easier.

Hugs,

Connie


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


Desi123
New Member


Date Joined Jan 2010
Total Posts : 12
   Posted 1/12/2010 7:06 PM (GMT -7)   
Thanks again Connie and Sue. This is useful information and we need all the help we can get. Mike went back to his apartment today and he is scheduled to have home health nursing everyday. It is concerning because his legs had to be lifted into the car when he left but he really wanted to go home and was excited to be back in his apartment. We are hoping he will find a new wife from the women that live in his apt. complex that might help us with all these health challenges. We can hope and pray anyway!!   God Bless You All, Desi

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 1/13/2010 10:50 AM (GMT -7)   
Connie, yeah that was the finger thing...lol! MY cat sat on the scale one time looking at the machine while it was talking (doug was in hospital) and it sent her weight to the nurse who called me laughing wanting to know if Doug lost weight cause he only weighed 18lbs. They had to monitor weight lose or gain of more than 10lbs lol
Sue
When I started counting my blessings my whole world turned around.


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 1/13/2010 12:36 PM (GMT -7)   

Sue, that's funny!  At least you got the cat's weight!   smilewinkgrin

Hugs,

Connie


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


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 1/13/2010 3:47 PM (GMT -7)   
Connie the cat has been on a diet for a year and still weights in at 18lbs....... good thing she isnt a lap cat
When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/13/2010 3:58 PM (GMT -7)   

Sue, I had a cat I had to put down last summer who was 19+ lbs.  At one time, he was about 22 lbs.  He was 19 1/2 and just old and arthritic; then stopped eating anything but chicken breast.  The extra weight is really hard on their bones as they get older.  He could no longer jump up on anything--had to be lifted on and off the bed or a chair.  He would throw a fit if I withheld food and just bug me to death.

Hugs,

Connie


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

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