Questions from a Living Organ Donor

[stella0724]

My brother has Hepatitis C and cirrhosis of the liver. He is experiencing acute on chronic hepatic failure, and he's currently gravely ill and in the hospital. His white blood cell count is critically low, and he's had coffee ground emesis in the past 24 hours.

We've discussed the possibility of my giving him my right lobe of liver, if the worst happens. I feel guilty for worrying about my own fate under the circumstances, but, I've had a horrendously bad experience previously as an organ donor.

12 years ago, he had Acute Myologenous Leukemia and received my bone marrow as a rescue, and was cured. His blood is now cloned from my blood, even possessing feminine chromosones. As a living donor, I am literally like his twin, or his clone.

He couldn't ask for a more perfect donor, but, I'm scared to death.
I would never refuse him, even if I risk dying, but, it concerns me that I cannot find any depth of information on what to expect as a living donor.

When I donated my bone marrow, they said it would involve a little *discomfort*, but, it turned out to be far worse than I ever imagined. I hemmhoraged so badly that I lost half my blood volume, and was anemic for months. The pain was excruciating. The transplant programs use their resources for the sick patient, not the healthy one.

I am terrified that this will be another drive-by organ donation, with them discharging me after a few days, when I have no one to help or watch me. I have a clotting problem, and I'm afraid that if I nearly bled to death with a bone marrow transplant, I will definitely be more at risk when they bisect my liver, letting the insurance company dictate when they shove me out the door.

Has anyone been a living donor? How I can protect myself, and my own health against a callous system that, I perceive, frequently treats the healthy donors like slabs of fresh meat, and uses all their resources for the sick patient?  

I had no advocates as a living donor in the past, and it terrifies me that it will be much worse as a living liver donor.

Thanks in advance for any information.

[BThompson4]

You might have a hard time finding a transplant center that would accept you as a donor (because of your clotting problems) or one that even does living donor liver transplants near you.  I checked the UNOS statistics and the University of Washington Medical Center in Seattle has never even done a living donor liver transplant, so you couldn't get the procedure done in Washington.  I would talk to the medical center social workers.  They probably have seen this type of situation before.

[Susie2007]

What an angel you ar for helping your brother and wanting to help again. However, you said that you have clotting problems. I really doubt that you would be accepted as a donor. Bleeding from a bone marrow biopsy is almost unheard of yet it happened to you. The liver is an extremely vascular organ and it make clotting factors. I really expect you can't donate a part of your liver.

[stella0724]

Thanks for your comments.

To Mr. Liver, thank you so much for your encouragement. I would never regret saving my brother's life. I was grateful that he survived leukemia, and it was only the complications I suffered which caused my current
anxiety. I hope that the TP team in this instance has evolved from the team which harvested my bone marrow for my brother's transplant.

I have been reading up on the procedure and was stunned
to learn the liver regenerates! If I don't have complications,
it is a better deal than donating a kidney. Since my brother
has kidney failure, too, that's also something that's looming
in the future for us, if he survives this latest ordeal, God-
willing.  I feel like I need some counseling to deal with these
issues and fears, but, none are available to the donor, just
the donor families dealing with the sick party.

To Copyman, I am in the USA. My brother and I did the BMT
in Seattle, and it was eye-opening. I felt like I was in the
Third World. They harvested my bone marrow and sent me home two hours later. When I spouted blood from the extraction sites, and went back, they put pressure bandages on, but, I bled internally. They acted
like I was a hypochondriac, or wanted attention. I was so insulted that I didn't go back again when I started running fever and had difficulty breathing. By the time an ambulance was called for me, I was in poor shape. Again, the treatment was horrible. I don't regret donating bone marrow to save someone, especially my brother, but these transplant teams are set up for th e sick patient, not the healthy donors. They
made me feel like a piece of meat.

The donors are an afterthought in some of these scenarios. They
lied to me about the pain and recovery period. They seemed to
resent expending resources for the healthy one, and even delayed
giving me blood, explaining they needed it for their cancer patients.

I will donate part of my liver if my brother needs it. I just dread
and fear going through the process again, for not only the
pain and disabling short-term effects and risks, but, the
treacherous way the insurance companies and TP teams
disregard the needs of the donor, like we're a piece of
medical equipment, or cadaver donors, already deceased.
In my opinion, from what I've heard from other  bone marrow
donors, this is a problem that the public never hears, for
fear of discouraging participation.

Thanks alagirl for the explanation about coffee ground emesis.

I hope you all don't think I'm a crank. I'm terrified. My heart is
in my throat and I have extreme anxiety, maybe from the
memory of how horribly I was treated 12 years ago with the
bone marrow transplant. I don't mind going through pain as
much as the disrespect and the inhuman way the staff and
team treated me, like I was not a living and breathing donor.
I just don't think some of these teams are geared to consider
the needs of the donor, since we are the healthy ones.

I sound so selfish, and petty, but, I have to face this and
I feel like I will have no advocate when I go under the knife.
My brother's condition requires the family's attention, and
I will slip through the cracks again, having no one to tend
to me after they discharge me. Last time, they didn't even
give me a prescription for pain without me carrying on.
Then, they wrote a script for like 5 vicodin. It was really,
REALLY bad.      

I hope the liver TP teams have more sensitivity.

Thanks again for your thoughtful replies.

[alagirl]

coffee ground emesis is vomiting partially degested blood from the stomach.  Blood's tendency to look black when vomited (it also gains a black, though more tarry appearance when transported in fecal matter) is why it is referred to as "coffee ground" in appearance.

[copyman]

what country are you in? sounds like you are getting third world treatment. coffee enemas in a hospital? i would make sure that you have in writing that you will receive post TP care UNTIL HEALED. Also they have things that can make your blood clot before an operation. best of luck

[Mr Liver]

If your brother is listed for tp, his team should be able to run you through the complete scenario from start to finish for both of you,including risk, and followup care. I get asked some LDT questions and I know a bit. It is very rare for a LDT to regret their choice. There is risk as this is very major surgery. Mortality rates exist at all transplant centers for these types of liver tp's. I think the mortality rate for LDT was under 3 %.

Within 6 weeks after tp both lobes of the liver in the two of you will grow to the approximate correct weight . Incredible stuff.

You can learn more by googling it. You will probably get many hits.
regards,
Mr Liver