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Turned Down for Liver Transplant- now what

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Posted 7/19/2012 3:35 PM (GMT 0)
Yesterday, we were given the tragic news that my Dad was rejected for a liver transplant because he has advanced COPD. He had a feeding tube placed, to get stronger for the transplant, and had started to feel a little stronger. With this news, Dad is going to decided whether to continue with the feeding tube. We can't seem to to get a doctor to give us a prognosis. Last MELD was 18. We're feeling completely helpless. What can we expect from here?
Posted 7/19/2012 6:46 PM (GMT 0)
Daughter, this is very sad news. You would think that someone at the transplant center would've diagnosed him with COPD prior to this. I'm assuming he was a smoker. Is he still smoking? If the feeding tube is removed, he will most likely starve to death. If the tube is kept in and no transplant is done, he will steadily decline and die, either from COPD or pneumonia or from liver disease itself.

This is the time for his hepatologist to be honest with you about what will happen. If doctors feel he will die within 6 mos. if left untreated, Hospice should get involved. They are wonderful for both the patient and the family, and will make sure that he is kept as comfortable as possible.

I am really sorry that the news isn't better.

Hugs,
Connie
Posted 7/19/2012 7:00 PM (GMT 0)
Your dad is in a tough situation. A liver transplant is major surgery and with COPD he might not survive it. Docs don't want to give someone a transplant who have other complications. When I was checked out for a transplant, almost a day of testing was spent on how my lungs and blood -oxygen levels were. Same thing for my heart.

If your father has a MELD score of 18, continuing the feeding tube and getting him stronger could enable him to live a lot longer. Ask the docs about that.
Posted 7/19/2012 7:13 PM (GMT 0)
Hi DIS,

I see your note this morning that your Dad has been told he is not a good candidate for liver transplantation by his center in Seattle because of his advanced COPD.

I had not heard that before and am so sorry to hear he appears to be ineligible. Is there any chance you would want to take him to a different center for a second opinion? Is he well enough to travel?

With a MELD of 18, he must be pretty ill. I will assume that he is not actively drinking alcohol if he was being evaluated for transplant. I would expect that he could have heptatic encephalopathy and other symptoms of advanced liver disease. If he is well enough mentally, he may be able to participate in planning for his final days. Are his affairs in order, his will, his medical power of attorney? How does he feel about heroic measures, the feeding tube itself? Have you called hospice? They could be a lot of help to him and to his family.

With liver disease, once the liver is fully decompensated, there is no cure bar transplantation, so he is most likely in End Stage Liver Disease. The course of this phase is different for everyone, but on the Mayo Clinic calculator, the mortality rate for 90 days with a MELD of 18 is less than 20%. So many patients with a MELD of 18, have time left. Though I am no doctor and have no idea what the status of his COPD may be.

Hopefully his doctors can manage his symptoms such that his passing will be pain free and without trauma.

Please post here during this phase of his care. Many here have or are now going through this phase of liver disease and can be supportive to you at this sad time.

Best,
Carol
Posted 7/20/2012 7:41 PM (GMT 0)
Daughter , Sorry to here about ineligibility problem . Meld scores do fluctuate a few points between check ups and in my case fluctuated sharply at times . It's entirely possible for him to survive for awhile and even " level out " ( Meld remains the same without noticeable changes in his health ) . This disease is so unpredictable .

As my doctors told me prior to my last surgery " It's about quality of life not quantity " . Make sure he is prepared for the worse in all matters financially and spiritually ( Spiritually : Being either religious or just at peace ) . The quicker you and he get over the initial shock of what seems like a impending doom the quicker you will set about the business of enjoying whatever time that life offers him .



A. Ziffle
Posted 7/20/2012 11:33 PM (GMT 0)
Very nicely presented Mr. Ziffle!! You are absolutely right, quality of life means much more than living longer with "no life".

Enjoy the time you have with your Dad, and build some great memories!!

Debbie
Posted 7/21/2012 2:11 AM (GMT 0)
Debbie , Not to hi-jack this post but if everyone had the perspective of just how are lives are so fragile . I truly believe there would be a lot more folks living a happier life at this moment . It's said " You don't know what you got till it's gone " . No other statement fits this scenario so well .



A. Ziffle
Posted 7/21/2012 2:32 AM (GMT 0)
"our lives are so fragile"

Brought to us smack in the face with the CO killings. And those people were just going to a movie. So horrendous and sad.

Hugs,
Connie
Posted 7/21/2012 6:41 AM (GMT 0)
It's an art living between the rain drops in the moment with a person who has just found out there is no more treatment. I never quit believing that Mike would beat the odds yet I prepared for the worst. However, in our home .. there was no talk of doom and gloom.. the rule was leave the medical stuff outside the door... this was when we were told he had six months to live... the first month was horrible as he laid around in self pity... till finally well, I told him get his butt up ... and live... and he laughed at me and said "darn,girl" then ok... and off we went through the next 3 1/2 months. At night while I worked he pumped out the messages... love u2 was the most frequent...of course that was after I had to give him  "text" lessons... but he was learning.. laughing.. and loving... in the midst of the rest... the inevitable.. every morning I would pray as I cracked open the front door that he would be alive and every morning he would holler out... I'm still alive... I would sigh a deep breath... and leave the uncertainty at the door... finally  one day... I cracked open the door... and there was no answer.. we were going to the doctor for a paracentisis procedure to remove fluid... I raced to his room...his eyes told it all... I can't get up...he said.. even then his eyes locked with mine... we knew... he knew... it was only 24 hours.. pneumonia, kidney failure, and blood pressure crashed... he fought with the mask they had on him... I asked the doctor if it could be removed safely ... it was simply oxygen not a tube... they took it off... and Mike insisted on it being taken off... his heart crashed...pulse slowed... breathing followed...I had 1 second to tell this man I loved he was dying... I had another to tell him... I love you and with his last breath.. his eyes locked on mine he said "love u 2"  the secret was the walk... the secret was for those moments between his despair and that last love u 2 there was quality of life... he loved...laughed.. and lived in the moment... We were blessed to share the moments of our lives...

Sandia

Posted 7/21/2012 11:06 AM (GMT 0)
Very beautiful, Sandia. It surpasses anything we could've said. Your love and commitment to each other is truly evident.

Hugs,
Connie
Posted 7/29/2012 5:36 AM (GMT 0)
Thank you all for your kind words. We are working on having his records sent to the Portland Transplant Center and the Mayo Clinic in Phoenix for a second opinion, but we're wondering what the chances of one transplant center saying no, and another saying yes....just doesn't seem logical.
We are pushing for a new pulmonary test (for COPD) since the day that test was conducted, he collapsed immediately following and was admitted to the hospital for 10 days because EVERYTHING was out of whack, blood, sugar, potassium, sodium, etc. I am hoping the transplant center will conduct a new test and it will show to be more promising. It's devastating news, and no one will give a time frame of how much time he has without a transplant. He seems to be feeling better since all his levels were corrected in the hospital.
I have a question, why do patients in ESLD receive blood transfusions? I can't seem to get a definitive answer on that.
All your stories have touched me, and really appreciate all your suggestions, thank you so much for sharing. This has been one of the most difficult things for our family to go through.
Posted 7/29/2012 10:29 AM (GMT 0)
DIS , To my knowledge it's not only possible but very likely for a transplant to be done at another hospital . My Hepatologist at UNC Chapel Hill , NC. works with the Mayo clinic in Jacksonville FL. ( I live in NC. ) . They seem to have different standards between hospitals and the mayo also has more access to donor Livers .

I have the option to get a " pristine Liver " checked thoroughly or one that's not been rigorously evaluated , I'm not sure what standards of evaluation differs between the two . I do know mayo does alot more transplants than UNC and they seem to be a bit more flexible with qualifications . Connie is a recipient of a Liver from the team at Mayo . She may be able to define the standards better . I'm not high enough on the MELD to be considered for transplant at this time .

The loss of blood has to do with the transplant procedure itself , Again I defer this question to a moderator but in short I believe it has to do with the livers natural function . It is a filter for the blood in common terms , Large amounts of blood pass through that organ . Naturally I figure when it's removed there will be blood loss , Hence the need for blood . Hope this helps you all out . Good luck with the second opinion .



A. Ziffle
Posted 7/29/2012 11:13 AM (GMT 0)
Mayo transplants at a MELD of 25 and up. Transfusions are also given when a patient is very anemic, as many are prior to transplant since appetite is almost nonexistent for many. If you take him to Mayo, they may want to do all the tests again. I had had blood work and scans done at Shands prior to going to Mayo. Mayo wasn't interested in their info...wanted to do all their own testing. They are very through and it took me about 6 wks. to get through it all.

Hugs,
Connie
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