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Hello, all. I'm new here, having found this forum while searching various issues my brother was/is having post liver transplant. I was originally going to post and ask some questions about the side effects he was having from Prograf, but we are past that now, and well into deeper and darker waters.

His journey started in June of '17 when he was told that his NASH (Nonalcoholic steatohepatitis) had progressed and he had decompensated liver disease. The Dr. who told him was very blunt and informed him that without a transplant he was going to die. Being only 44 years old, this was understandably traumatic.

Fast forward a few months (and one hospitalization for hepatic encephalopathy and a couple for low platelets and exhaustion) he was admitted to the transplant unit at Baylor hospital in Ft. Worth, TX. Once there, things went VERY fast. He was placed on the transplant list on 11/30/17, had his first liver offer the next day on 12/1/17 (which the Dr. turned down at like 4am ... long night), had another offer on 12/2/17 which was also turned down by the Dr, and he was discharged on Sunday, 12/3/17 to wait at home since his blood levels looked ok.

On Tuesday, 12/5/17, he got a call from Baylor in Dallas with another offer. We all went up there (a little more than an hour drive, which I knew meant this would be the one because he always has to make things difficult, LOL) and sure enough the liver was approved and he went into surgery around 4:30pm with the actual cutting starting at 6:30pm. Everything was going smoothly until around 10:30pm when his left lung spontaneously started filling up with blood. They didn't (and still don't) know why it happened, but it took a couple hours to get him to the point where the surgeon could close. The anesthesiologist said it was a real struggle keeping him oxygenated for a while, but the bleeding stopped and they were able to suction it out and get him going.

At 2:30am the surgeon came to talk to his wife and me and explained everything that happened. We then followed him to the ICU and waited another couple hours in the family room until they were able to get a huge clot that was blocking his airway pulled from his left lung. He had also had a chest tube inserted during this time.

Needless to say he looked rough. We were told the prognosis was generally ok but that he could still go either way, so we just waited to see what would happen.

He progressed well the next couple days, finally coming off the vent on Saturday, 12/9/17, and getting to go up to his room on the transplant floor the next day. This was a big relief to us all and we felt like he was on the mend. Over the next few days he started walking, first with a walker and then without and talk of going home started up.

We had all noticed that he had developed a pretty severe tremor in his hands. He shook like an old man when he went to do anything with them, and his wife had to help him eat. No one at the hospital seemed too concerned about it, though, and we all assumed it would pass as he got further along and stronger.

It took a while to get the chest tube taken out because breathing was still difficult for him. His x-rays showed his lung was clearing but there was still something going on. They decided to do a CT scan and found that the top lobe of his left lung was infarcted, which helped to explain his just so-so O2 saturation and difficulty breathing. They decided to remove the tube and let his body get to compensating for that damaged lung.

During that week I decided to stop going up there every other day and possibly bringing germs with me, so when his wife told me they were discharging him on 12/18 I though all was well, but it was not. That week he had developed some dementia and was actively hallucinating. The explanation I got was that they felt it was a side effect of the Prograf and should start getting better as he adjusted to the medication. I'm still baffled that they discharged him in this condition.

His first night home was a rough one. He rolled himself out of the bed and onto the floor, trying to crawl to and out the front door of the house. When his wife and her cousin (who is staying with her to help out) got to him he told them there was someone down the road honking for him and waiting for him to come outside. The next night she stayed with him in the downstairs room (where he was alone the night before) and he talked to imaginary people literally all night. She sent me a video of a full conversation he was having with someone.

The next day I went over there and he was still talking and acting crazy. He kept trying to get out of his chair, and when I'd ask him where he was going he'd tell me we need to "go help her bring stuff in" and when I'd ask him "help who" he'd say "mom". Our mother passed away last December from breast cancer. I'd remind him she was dead, and he'd tell me that he meant his wife. I'd then tell him she was taking a nap and he'd shake his head an lean back in the chair, seemingly placated for the time being.

Weirdly, mixed in with all of the crazy-talk were moments of clarity where he was "normal" and would tell me things, like the worst part was he felt like people were talking down to him or like he was an idiot. It was sad to see him come and go like that, and he said that he knew when he had said something crazy, which made me so sad for him. He is an author and a really smart guy and to see him like that was painful.

While I was there I took a video of him to show my wife. She is a nurse and I respect her opinion and I wanted her to see how he was shaking and acting. The video I took was of him after he had asked for the TV remote and was just staring at it, seemingly lost in it's infinite possibilities. He was literally just holding it up and moving his eyes over it, almost like he was stuck in a mental stutter.

When I got home I showed it to her and she said that wasn't normal and that he needed to go to the ER. She had me tell his wife that she needed to call his transplant coordinator and tell them what was going on. She did and the coordinator spoke with his surgeon, who told her to get him to the ER up at Baylor Dallas so he could be admitted there.

Over the next couple days he progressed from hallucinating to full-on paranoid delusions, culminating in him having a horrible episode at around 11pm on Friday, 12/22, where he woke his wife up by screaming at the top of his lungs. He then started holding his breath until he'd turn purple and just about the entire floor of nurses came in to help. They couldn't get him to stop holding his breath and his O2 saturation plunged into the mid to low 80's. They made the decision to take him to the ICU, sedate him ad put him on the vent.

This lasted until 12/24, when they removed them vent. I went up on Christmas Day to see him and he looked so small in his chair (I've forgotten to mention that during this process he's dropped about 170lbs). His voice was tired but he seemed mostly "with it" but he just looked ill.

When he got to the ICU he started developing a fever which would fluctuate. They started him on antibiotics and antivirals, basically carpet-bombing his body in an effort to kill whatever it was/is. 

I went back up on 12/26 to sit with him while his wife was gone and he was kind of out of it. Not really hallucinating but saying random things that maybe made sense in the context of what was happening (like telling the nurse he didn't have shoes on while she was shifting him around in his chair, thinking she was getting him up) but were not based in reality. His fever was up that day and they were still trying to figure out what was happening.

Cut to the next day. He was having trouble breathing and his O2 levels started dropping. They decided to put him back on the vent so his body could rest while they treated him, so back on the vent he went.

During the next day he developed a bad rash with his skin peeling. We still don't know what caused/is causing it, but one Dr. did change one of his antibiotics before it started so they removed that. It seems to have gotten a little better, but it fluctuates from one day to the next. I saw him yesterday and the nurse said it looked a little worse than the day before but better overall still.

There has been talk of him maybe having Graft Vs. Host Disease (which would explain the rash and fever). This is exceedingly rare in liver transplants but does happen. The Dr. doesn't think that's what it is, but it is still up on the board of possibilities. We're waiting for his skin biopsy results to tell us more and to help rule that out or in. They took the sample on Saturday but the lab was closed for New Years. We thought the results would be back yesterday but when I was up there they still hadn't come in.

Add to this that the Norepinephrine he has been on to help stabilize his blood pressure (which kept dropping due to the infection or whatever illness it is) has caused blood flow in his hands to become very poor, to the point that his left index finger looks like he has frostbite. They are treating this with topical nitroglycerin and the nurse said he's not at risk of losing his hand, but man it is disconcerting to look at.

And the last, worst bit of news is that his liver enzymes have been high and his platelet counts have been so low he's needed transfusions and they are worried that his new liver is starting to cease functioning and he might need a re-transplant. They've had to drastically lower his immunosuppression meds to help his body fight his infection (which they think was/is an atypical/viral pneumonia and CMV) which may have allowed his body to start the rejection process. Again, this is not a certainty and the Dr. hasn't said it is needed yet, but it is possible it will come down to surgery.

As of yesterday (no update yet today) he hadn't had a fever in over 24 hours, his white blood cell count was normal, and the nurse said he seemed to be on the recovery-side of his septic shock (oh yeah, I failed to mention that ... he was also septic and acidotic, which he is no longer, and is on a CRRT machine to help clean his blood and pull off fluids). They are past the point of having to force fluids and are now taking the fluid back off. His tissues are VERY diffuse (his skin looked tight when I was there) and they are running him about 1-liter negative on fluids. They want to pull off more than that but are keeping him at that rate for now in an effort to just get him leveled off and stabilized. Plus, the nurse said that some of that diffusion won't go away until he can get up and move around.

Since his surgery I've gone from happy he was getting a second chance, to worried but hopeful, to now feeling for the first time that he isn't going to make it. I'm trying hard to stay positive and supportive of his wife, but it's hard. We knew going in that his odds of having some complications were about 50/50. He was at a pretty severe health deficit going in with a MELD score of 35 (which put him at the top of the list in the DFW area) and his body was pretty sick so we knew it might be tough, but I always had hope and believed it would work out. And I keep telling myself that had he NOT had the surgery he was 100% going to die, and may have even been gone already with how sick he was. But that is a poor comfort.

I guess with this I'm not only wanting to vent, but also looking for some hope or guidance from someone. And also sharing for those that are maybe going through similar, or even different, difficulties so they know they aren't alone. This process is fraught with confusion and uncertainty and an isolation that is hard to describe. I've never known anyone who had a transplant before so have no one around to lean on for guidance or advice. So here I am leaning on all of you strangers.

This is very long, and for that I apologize. There was just a lot of info to get out and I didn't want to leave anything out that might be important. If you made it this far, I thank you. You are a saint and have more patience than I probably do.

Take care.

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Replies

  • Sorry to hear your brother did not make it with all he went through. Words seem to fail in these situations. I am sure your brother fought as hard as he could. I had a brother who died when we were both very young. So I grew up w/o siblings. I imagine how hard this has been on you and your family. Best regards to you and your family. Wishing you all good health. 

  • Dear Scott,

    I am so very sorry to hear of your brother's passing. You and your family have my deepest condolences. I will pray for you all and keep you in my thoughts. May God surround you all with His abundant love and give you His strength during this difficult time.  

    Warmest regards,
    Bobbiejo

  • Oh, Scott.  I am so sorry to hear this.  It never occurred to me that the genesis of you brother's difficulties might have been graft vs host disease.  At what point in all of this did his tx team reach that diagnosis?

    I hope you and your family can find some peace.  All of this must have been so very hard on you.  I am so sorry.

    • Well, that’s a point of contention. Prior to surgery they didn’t take a blood sample they would have needed to test for chimerism. They kept telling us the lab was doing the test but days later told us the blood sample they took was no good for this test because he’s had so many transfusions. They did start GVH treatment but it was too late as his white blood cells were all but gone by then and the photopheresis needs WBC’s.

  • Hello, and thank you to everyone that has posted here.

    Unfortunately, I have to report that my brother passed away on 1/15 at 6:30pm after his wife (in consultation with me) decided to change his status to AND (Alow Natural Death) after it was determined there was no hope of a recovery. He had been on the ventilator from 12/27 until just before his passing (when we decided we wanted to see his face before he was gone) and he hadn't been conscious in about a week. The Gravt Vs. Host disease was just too much to overcome, as not long after I posted this his white cell count dropped to 6, then 3, then 1, then 0.6, then <0.1 in the span of 5 days. His immune system was just gone.

    It's been a difficult few weeks, but we are managing. I still have days where I am full of grief, but other days are mostly ok. I can honestly say that I lost my mother December of 2016 (just over a year prior to this) and it was hard but this has been WAY harder. Justin was my best friend and had been for most of our lives (I'm 42, he has just turned 45 a few weeks before his passing) and that has made this very difficult. But life goes on, and every day I shuffle a little further from my sadness.

    I am posting this link to his obituary posted on the funeral home's site. Feel free to visit and sign the electronic guest book. I wrote the text of the obituary and I hope it helps you to know him a little.

    Take care ...

    Justin Macumber's Obituary

    Justin Macumber Obituary - Laurel Land Funeral Home and Laurel Land Memorial Park | Fort Worth TX
    Obituary for Justin Macumber, Justin Macumber, 45, of Fort Worth Texas passed away on January 15, 2018. He was born in Killeen, Texas on December 13,…
    • Scott,

        I am very sorry to hear of the passing of your dear brother.  May the God of all comforts be near and dear to you and your family during these difficult days of sorrow.  Thank you for all you did for he and his family through this great trial. I know his story will be a help to others going through similar circumstances.

      Mark

      Justin Macumber Obituary - Laurel Land Funeral Home and Laurel Land Memorial Park | Fort Worth TX
      Obituary for Justin Macumber, Justin Macumber, 45, of Fort Worth Texas passed away on January 15, 2018. He was born in Killeen, Texas on December 13,…
  • So sorry to here your brother has had such a hard time. I recommend reading my story. I was in the hopsital for 5 months and once my heart stopped. They told my wife to " make arraingments" and told my son if I DID live I would be a vegatable. They were wrong. I lost the ability to walk, talk, and eat by mouth. When we left the hospital they told my wife to expect 5 good years. I am now going on 19 years and have never been hospitalized since the original transplant. I am 71, just sold one of my two Harleys and exercise regularly. Keep positive, never think negative regardless of conditions. Just my 2 cents. I'll keep your brother in my prayers. Wishing good health to all.  

  • I had my liver transplant in April 2009.

    Although I can't comment too much on your brother's experience, I can say that the first year post transplant is the hardest. Recently I've heard of many people having difficulties related to the anesthesia post surgery.

    If it helps to hear this, I'll tell you that although I've had a fairly easy time of it, I did indeed have one big problem post transplant that was resolved. If you trust his team, know they are doing what they're trained to do and will try their best.

    Good luck

  • I have no words of advice or information as I have never heard about such a complicated outcome.  I am very eager to hear some good news about him very soon.  It must all be such a terrifying and confusing time for all of you.  Please keep us updated, OK?  We are all hoping he pulls through and will have a complete recovery,

  • Scott,

      Wow..Your brother has really had a rough time with his transplant.  I want to assure you that this is not a typical outcome.  I am so sorry for his dear wife and your entire family.  Oh my, there are just not adequate words to describe how this has made me feel.  My liver transplant was nothing like this.  I truly hope and pray that he is on the mend and that his body will accept this new liver. In reading the post it made me question whether there may have been a problem with the donor liver.  Too many bad things happened to him so quickly.

      Please be assured of my prayers for your brother and the entire family.  May God's will be done.

    Mark
    Liver Transplant 2015

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