Friday, October 14, 2011

Liver Transplants Do Not Always Work Out

I hear a call on the overhead paging system requesting all available hands to help with a turn in room 4. My hands are available, so I go. I join two other nurses and a tech at Mr. Jones’ bedside. I can see right away it is another liver transplant gone bad. We see quite a lot of them.

If you go to the patient information websites for liver transplant programs and click on “waking up in the ICU” you generally find something like, “you may have some pain from your incision, but your nurse will take care of that.” The same site will tell you that 80% of patients survive for more than 5 years. That means that 20% do not; but try to find information about what happens to that 20% and you won’t find anything. So, here goes.

Mr. Jones was deranged and panicked from toxins (chiefly ammonia) that had built up in his blood due to liver failure and organ rejection. Had he not had a plastic breathing tube in his airway, he would probably still not have been able to speak more that a word or two and groan. As we go to turn him, he resists everything we do. His bed is full of blood, stool and bodily fluids. We need to clean him up and change his sheets.

He is in four point restraints – tied at the ankles and wrists with cloth straps that stop him from trying to get out of bed (he would fall) and from pulling out his breathing tube or his various drains and lines. As we undo the restraints to turn him, Mr. Jones claws at us. He makes a fist and tries to hit us. He tries to kick us. As soon as he gets slack, he tries to grab his breathing tube. We are used to this type of behavior. We hold the cloth straps tightly where they meet his wrists, “Please don’t do that Mr. Jones.” We need four people for this turn. A nurse can get in a lot of trouble for “letting” a patient pull out their breathing tube. Self extubation is an urgent emergency that requires the attention of multiple physicians and activation of the unit’s staff assist system. Suddenly, the room will be filled with 20 pumped up nurses and doctors like in a code and they will all demand “Why wasn’t this patient restrained!?” which is not to say that there is not understanding for what can happen from time to time. The patient also is at risk for brain damage from hypoxia etc. We do not give Mr. Jones any leeway. He is not going to pull that tube.

He is too weak to be dangerous to us, but he is full of Hep C and other nasty diseases, and even a scratch would be worrisome. His obviously sincere efforts hurt us do not evoke compassion. With his pale skin, drawn face and angry eyes, he fits the mold of the mean drunk. One can easily imagine him turning this violence on his lovers. My mind wanders to the moment he heard that a liver was available. He must have been so happy. All that waiting for some poor guy to drop dead was finally over. Well congratulations Mr. Jones – you got your liver.

We, his enemies, have him pulled up on his side and are wiping the liquid stool from his paper thin, yellow skin. He is full of fluid. His skin is tight and painful. Any puncture site (and he will have a few) oozes clear yellow fluid (if not blood) and does not stop. His belly is distended to perhaps 10 times its normal size. His scrotum has swollen to the size of a cantaloupe and it is raw and bleeding. He had expected to be home watching TV by now.

I am thinking about writing this. I test my thoughts, “Do you think he knew he could end up like this?” “I do not think any of them have any idea of it.,” confirms Terry, the charge nurse. Terry has been a nurse on this same unit for more than 10 years. She likes my straight talking and reciprocates with her own. Unbeknownst to me she has already put in for a transfer to another service. Many of the senior staff have already left over a conflict with the new manager. Terry was a holdout, but she is now joining the exodus.

The tech nods in agreement. The other nurse in the room is younger and less experienced. She makes a sour face and avoids eye contact. Perhaps she is thinking about the heroic transplant surgeons or the miracles of modern medicine. My perspective of the scene before us is not one she has any intention of embracing. She would rather I keep it to myself, but she is clearly in the minority so she does not say anything and keeps busy cleaning.I try to remind myself that transplant surgeons are not intrinsically evil. I have seen almost exclusively the 20% of liver transplant patients that die long and horrible deaths. Perhaps if I saw more of the other 80% I would feel better about it all. It is all somehow ghoulish though. I am not able to get comfortable with it. Has Mr. Jones been reduced to the mentality of a caged animal by the influence of his disease, or has he realized too late that he is being flushed down the drain of modern medicine with no expense spared? Why shouldn’t he see us as his enemies? He was not told of this possibility which is now his hellish life. I have spoken with a few patients whose liver transplants did not go bad. They had no idea how things could have been. What were the statistics for Vioxx? One in how many hundreds of thousands died? For liver transplants it is one in five. And the Vioxx people dropped dead suddenly. They did not suffer over weeks and months like these transplant patients do. Yet we never hear about the transplant patients in the media - just calls for more donors.

Here is another concern – Mr. Jones was probably still in fairly good health before his transplant. The healthier the patient is, the better his chances after transplant, so the surgeons do not like to wait for their patients to get ill. When laboratory tests and scans show that the liver is likely to fail, the patient is encouraged to sign up for the transplant. The transplant takes place while they are still in good shape which leaves open the question as to how many good weeks, months or years they would have had without the procedure.

Then there is the donation process. Nurses I have spoken with who have assisted with organ harvest express deep discomfort with it. It is by all accounts a bloody mess. The nurses complain that the doctors are not properly respectful of the donor bodies. I wonder if it is possible to respectfully cut a liver out of a functioning body. There is also generally a lot of joking around that goes on in the OR. I imagine that this could seem very different when you do not expect the patient to get better at the end of it all.

A lot of money is generated from these organs. Transplantation must be a billion dollar industry. The surgeons are no doubt well paid, but the industry also supports a host of coordinators, “counselors” who speak with the families of potential donors (do they get to keep their jobs if they are not good at getting families to donate?), nursing staff, clerks etc. The ICU nurses also care for the donors bodies as one-to-one or even two-to-one patients because of all of the extra lab work and medications that are required for maintenance and preparation of the bodies. Again, these nurses would generally rather be spending their time on a patient that has a chance of getting better - and that is without even considering that the recipient might not do well. So many livelihoods are at stake. Shall we pretend that no one is influenced by this?

I once saw a candidate for organ harvest being evaluated by a surgeon. The patient had been a two-pack-a-day smoker for twenty years and the surgeons were considering taking his lungs for transplant because he had a small frame and small lungs are in high demand for young cystic fibrosis patients. The patient had suffered from a heart condition, but they were considering taking his heart as well. In the end it did not happen. I heard the surgeon talking on the phone saying that he would do the harvest, except that he had never done it before and had only observed once. He did not feel comfortable doing the procedure on his own and there was no one else available at the time.

The unfortunate liver transplant recipients suffer through liver failure and organ rejection at the same time. If they stabilize, they may be confined to bed, weak, of disturbed mind, swollen and in pain. These are the patients who beg for death and their pleas are almost always ignored. The surgeons seem to live with themselves by not contemplating the cases that go bad. They make their daily rounds and encourage the family members to remain hopeful. ‘We just have to get on top of the latest infection. Maybe he will only need dialysis temporarily.’ The family members somehow keep their faith in the surgeons and become callous to their loved one’s pleas (he is feeling weak, who could blame him? but I will be strong for him). These patients pull on anything they can get their hands on. They will rip the feeding tubes right out of their stomachs. The nurses, who are often the most sympathetic to their wishes, are also the ones who have to make sure they are tied tightly at all times.

Once I found myself yelling at one such patient whom I had untied for a short period in the hopes of giving him more freedom. “Stop pulling on that! If you don’t, I am just going to have to tie you up again!” I felt someone watching me and turned around to find the adult son of the woman in the next room giving me an icy stare. How could I explain it to him? The next day I was filling out a job satisfaction survey. I was surprised to find the question, “Do you feel your work is hardening you emotionally?” I was even more surprised as I found myself clicking on “strongly agree.”


0ddsandendz said...

Finally someone with enough guts to say, "It doesn't always have a happy ending." I had a liver transplant in 1998. I was in the 80%.

I woke up in the ICU on a respirator and tied down, because of an emergency TIPPS procedure.
I just wish I had known more of what to expect--good and bad.

No one told me about the ammonia build-up and what would happen until after it DID happen. I don't remember any of it, just what I've been told happened.

Don't get me wrong, I am forever grateful to the donor and their family, but the doctors need to be completely straight with their patients.

Michael Catey said...

I too am one of the 80% (obviously). Your post makes me even more glad that everytime I go in for a check up I stop in the transplant ICU ward and on the general ward to thank my nurses and staff. They did such a wonderful job, I will never forget them. I only hope that seeing someone recover gives them encouragement to continue on.

Jay said...

Leo - You haven't posted anything for almost a year and I miss your honesty and insights. However, knowing that you're raising a baby now and still working (I assume), it's a lot to handle. Don't stop completely!

As a liver transplant patient, yes, I survived but had many complications and spent more than six out of eight weeks in the hospital following my surgery. Then, it took 4 1/2 years before I felt good (NO EXAGGERATION). A few months after I started feeling better, I learned that my new liver was cirrhotic (hep C treatments haven't worked). I really didn't expect all of this, probably because I didn't think things through.

I've been able to see my children graduate from high school and become happy in their college choices, which is a huge gift. But the journey hasn't been fun. I appreciate your candid take on liver transplants.

Keep blogging!

Leo Levy said...

Hi Jay. I went through a dry spell where I really did not feel I had more to say. I was growing up as a nurse and the challenges I was facing were more personal, difficult to communicate and less accessible. I recently moved out of the ICU to a surgical floor which was a change that was very overdue. I have been struggling with burnout, but with the change it has been a little better. I do have a few things I would like to write about - the 30 day rule of reporting for surgical mortality is high on the list. Our third child is about to turn 2 and we are starting a business, so there is absolutely no time right now, but I hope to get to it soon. Through my rough patch it has been a source of comfort to have the blog up and still getting steady, if small, traffic. 16,500 total visits! The cystic fibrosis post seems to get the most readers. This makes me happy as that was one of the experiences that really made me feel I should write. I am glad to hear you are well. I check your blog from time to time to make sure of that. I really appreciate your support over the years. Working a post-surgical setting, I would say the vast majority of patients are totally unprepared for what they experience postoperatively - and that includes simple surgeries. Preoperatively, people have other things on their minds and it is hard to convey caution effectively. I continue to feel that with transplants in particular a lot more needs to be done to educate and inform the patients beforehand. The system is set up to help you not think about it. Baby is crying. Thanks again. Stay well! Ys. Leo.

Natalie said...

HI Leo,
My brother recieved a liver transplant 9 weeks ago, and has showed no signs of recovery. He has been back and forth between the hospital the surgery was done and a PT hospital, trying to gain strength. However, he is so weak an dhas no appetite. He is so frail. The latest is disillusions, seizures,confusion, and face paralysis. He was mere hours from death when the transplant team called with a liver on November 12, 2012. I read your blog back then, but today searched for it again. What is happening? The doctors keep saying "setbacks". But, it feels hopeless from my end. He had alcohol induced acute hep and cirrhosis. He is 36. His mind and body seem to be deteriorating, I just don't know what to expect.How can he possibly come back from this??

Natalie said...
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Leo Levy said...

Hi Natalie,
Studies I have seen say that, generally speaking, when a patient becomes critically ill doctors tend to be more optimistic than nurses about whether or not a patient will recover. My experience is that surgeons are on the higher end of the scale in this regard for various reasons, (some good and some not necessarily so). Generally nurses are closer to the mark with their assessments, but it is important to note that neither doctors or nurses are particularly good at identifying which seriously ill patients will beat the odds and make a full recovery.
My advice would be to get informed opinions from people not on the primary surgical team. If there is a palliative care service at the hospital, try to get in touch with them. The hospital's patient advocate may be able to help you get in touch with the appropriate resources also. Doctors on the general surgery service would probably be well positioned to give a second opinion also. Ask questions about prognosis directly and be prepared to repeat yourself often. The answers you get may change from day to day. Ask the surgeons what they expect things to be like in a week, in two weeks, in a month etc. This will give you something to gauge progress or setbacks with.
Sorry to hear you and your brother are going through such a difficult time.


Stephen Stanley said...

I was transplanted in 2006 and have suffered from one complication after another, including being bed ridden for two years with dozens of stays in the hospital. Including several additional surgeries and uncountable procedures. I need a second transplant which will of course be more dicey as I am much weaker than before. My quality of life has been greatly diminished. The good news is I am still alive so technically one of the 80%.

Megan Cook said...

My mom had a liver & kidney transplant on tuesday, 6/4/13, and still hasn't woke up. they keep trying to ween her off the vent, but her body is just trying too hard to breathe. I'm hoping my mom isnt in the 20% that you talked about. although i'm getting a feeling something else is wrong. shes already been back into surgery twice, once to stop a bleed-out, and the second time to drain blood, clots and fluid off her lungs. The biggest part i'm having an issue with, is someone died to save her life, and now shes fighting to stay alive.

Jay said...

Hi, Leo. Hope all is well in your world. Looking forward to more of your insights (when the time is right). FYI, I will mark my 7th liver birthday December 3rd and I must admit that I never expected to still be here now. It's not all roses - I have some very frustrating side effects that are annoying beyond words. I recommend that your readers set their expectations low, because you never know what the outcome will be. I've read about many transplant experiences that work out much better than mine, and that is what I wish for any transplant patient. God bless.

Leo Levy said...

Hi Jay! Nice to hear from you. Thank you for your well wishes and all the best to you as well! All is well with me. I am working in a clinic setting now, glad to be out of intensive care. I have a few more stories I hope to get down one day, but I am afraid it will not be anytime soon. Best wishes also for you anniversary. I hope all is well. Leo.

Anonymous said...

My son had a transplant Dec 26 2013, he is on a trach and feeding tube. He was moved to a reg room on Jan 8 only to have the Hepatic vein erupt and he almost bled to death. They had to bring him back three times to life. Now he is still in the ICU on temp dialysis, trach and feeding tube. He is so weak and can't sit up. Most days he just stares into space. The doctors keep telling me he has an infection and does daily wash outs of the wound. I feel so bad for him and to the point of telling them to let him go...let me know what you think.

Leo Levy said...

It is not anyone's place to say when the time has come to 'let go.' From what you describe, your son is facing a very difficult situation. My suggestion would be to seek as many informed opinions as possible. The transplant team may have many secondary interests which may interfere with the flow of information. The longer a patient lives, the better it looks in the statistics, regardless of the quality of life etc. Ask for a palliative care team if the hospital has one. Ask for an evaluation by a different surgical MD (general surgery for instance). Nurses may not have the whole picture, but they may still have valuable insight - they do not have anything at stake as far as the outcome is concerned. Ask direct questions to the transplant team and be prepared to ask them over and over until you get a satisfactory response. It is important to understand everything clearly and completely. The decisions may still be difficult, or they may become obvious. In any case, clear understanding is an absolute necessity. I am sorry to hear you and your son are going through such a difficult situation. I hope you both are able to find clarity and peace. - Leo

newton juma said...

This is thoughtful.Newton@ Kenyatta University School of Medicine

Mahesh said...
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Monira Khanom said...

I read this post and I am glad I did not come across this pre transplant because I think I'd have started this journey off with negatitivity. I appreciate all the honesty in this post of course. My surgery was complicated as I was really unwell before the transplant. I had acute liver failure so everything happened very fast. It took me weeks to get on my feet after the transplant but now near nearly a year of transplant, I'm fit and well. Yes I do have some side effects from medications and I'm quite tired but I do have two little ones and I do the things I used to do still. I also write a blog,

Monira Khanom said...

I read this post and I am glad I did not come across this pre transplant because I think I'd have started this journey off with negatitivity. I appreciate all the honesty in this post of course. My surgery was complicated as I was really unwell before the transplant. I had acute liver failure so everything happened very fast. It took me weeks to get on my feet after the transplant but now near nearly a year of transplant, I'm fit and well. Yes I do have some side effects from medications and I'm quite tired but I do have two little ones and I do the things I used to do still. I also write a blog,

Team Starla said...

I know this is an old post but I had to say this. Yes there are a lot of failed transplants and I know many have died after their transplant or have had to have two or more transplants. But...then there are people like me. I was born with my liver disease. It led to liver cancer. I had my transplant when I was 13 years old. This past July, I celebrated my 25th anniversary, with the same liver. I have had rejection episodes, had one last year, that lasted for eight months. I am on a lot of medicines. All this being said, I don't regret everything.

If you are anyone still visits this blog, you are welcome to visit mine. It's about my transplant and life with this liver.

Thank you,

Leo Levy said...

Thank you Terri, and thank you for sharing your blog. I have added it to my links. "What the Doc Didn't Tell Me" is also a liver transplant recipient's blog.

Terri Lynne said...

Thank you Leo, no problem...feel free to share blog with other patients.

Paolo Galido said...

Hi there, hope this message finds you and your family well. Was wondering if we could be part of your blog roll?

Charaka Learning said...
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Abby Martinez said...
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