Newby: Liver transplant success, complications due to pleural effusion

Posted by bildad @bildad, Jan 5, 2022

I just recently came up on this group and felt it would be beneficial for me to join. I received a liver April 2021 after 39 years of Hep-C doing its thing. My paras were about every ten day yielding 6-10 liters per. I had an umbilical hernia that was treated at the ER. By the time I was released from hospital I had a hernia repair, TIPS, and liver transplant. I developed a persistent pleural effusion for which I wore a pigtail drain dumping to an Atrium half liter container. After ten weeks of 300-500 ml per day the thoracic surgeon decided to perform a VATS that ended up converting to open surgery with decortication of my right lung. Talk about pain! He didn’t tell me he would sever my seventh rib to gain access to my lung. Anywho, I’m now 8 months post liver and I’ve developed swelling and ascites. On my 6 month follow up I complained of severe pain and problems breathing but the thoracic team would not make an appointment with me and my transplant team bowed out and I saw a hepatologist. She said “this is just your new normal”.

So cheers to y’all and I’m dead happy to be alive and look forward to this forum.

Interested in more discussions like this? Go to the Transplants Support Group.

@bildad, Good Morning and Happy New Year and Happy New Life! Welcome to Mayo Clinic Connect.
Thank you for sharing your amazing journey. I admire your enthusiasm and I congratulate you on 8 months with your new liver. I can see that you have had a complicated journey to get to this new normal. I got my liver and kidney transplant in 2009. I think that we all are faced with the reality of a new normal and an eventual adjustment so that it becomes, over time, a normal-normal. My normal was/and is that I don't have a dark cloud of disease following me and constantly threatening my existence. Yes, there are adjustments, but well worth it.

What date did you get your transplant in April? My anniversary day is Apr 22.
How is it that you 'came upon this site'? How are you getting along with your new normal?

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Liver transplant is a cakewalk compared to thoracotomy. I was transplanted April 18. The donor was on life support when their family and doctors agreed to pull the plug. Liver was harvested that afternoon and transplanted that evening for six plus hours. Next morning I walked a quarter mile. I came up on this forum googling some of my "new normal" symptoms which I'm learning are not normal. Doctors are specialized to the point where they do not address the totality of the circumstances. Liver team has trouble communicating with thoracic team and patient is caught in the middle of the finger pointing. Cheers to what? Twelve plus years post post transplant experience. I guess you are sorta the gatekeeper and "brood mother" of these parts. I see your footprints everywhere I go. I say all that with fondness free of any malice. Thanks for your support.

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@bildad

Liver transplant is a cakewalk compared to thoracotomy. I was transplanted April 18. The donor was on life support when their family and doctors agreed to pull the plug. Liver was harvested that afternoon and transplanted that evening for six plus hours. Next morning I walked a quarter mile. I came up on this forum googling some of my "new normal" symptoms which I'm learning are not normal. Doctors are specialized to the point where they do not address the totality of the circumstances. Liver team has trouble communicating with thoracic team and patient is caught in the middle of the finger pointing. Cheers to what? Twelve plus years post post transplant experience. I guess you are sorta the gatekeeper and "brood mother" of these parts. I see your footprints everywhere I go. I say all that with fondness free of any malice. Thanks for your support.

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Hi Bildad, I'd like to add my welcome and hope you'll join others conversations to give and get support. Allow me to introduce you to some other liver transplantees like @athenalee @mikej @jackie421blfdgurl @gaylea1 @rrichardparker @kathycaudle @silverwoman @marilynwhitlock and many others. You may also appreciate these discussions.

– Incisional hernia after transplant: Anyone else? https://connect.mayoclinic.org/discussion/incisional-hernia/
– Liver transplant – Let's support each other https://connect.mayoclinic.org/discussion/liver-support-group/
– Pain after right thoracotomy with tracheoplasty https://connect.mayoclinic.org/discussion/pain-after-right-thoracotomy-with-tracheoplasty/

Also see the Lung Health group here https://connect.mayoclinic.org/group/lung-conditions/
If this is your new normal, let's see if we can help make it the best it can be. Have you considered getting a second opinion elsewhere where doctors work together with the patient – the whole patient?

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I guess I am one of the rookies here , trying to get in just to see doctors is a miracle! I have so much pain right now between knees , and joints , morning and nights are the worst . Hoping I can get in in the next few weeks , I am not real patient when it comes to people with out common since , but have to stick with it , after my varices I got little bumps on my head , of course couldn't see them so last night shaved my head , kinda like little scabs and bruised , toe nails have turned red under nail ! I guess it could be worse I am out side working all day , it's hard to except The only other thing before varices was had a rash on both sides of my stomach 2 a month before , I can tell you one thing , this is the best forum in the world ! MJ

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@mikej

I guess I am one of the rookies here , trying to get in just to see doctors is a miracle! I have so much pain right now between knees , and joints , morning and nights are the worst . Hoping I can get in in the next few weeks , I am not real patient when it comes to people with out common since , but have to stick with it , after my varices I got little bumps on my head , of course couldn't see them so last night shaved my head , kinda like little scabs and bruised , toe nails have turned red under nail ! I guess it could be worse I am out side working all day , it's hard to except The only other thing before varices was had a rash on both sides of my stomach 2 a month before , I can tell you one thing , this is the best forum in the world ! MJ

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@mikej, I'm sitting inside and getting grumpy about the cold and the snow. I feel ashamed to admit that when I think of you and what you are experiencing with your ranch chores and the ugly side effects you have shared. I sure hope that you are getting closer to finding a medical provider who can assist you.
How is this cold weather treating you? Do you know whether your symptoms are related to liver condition? And Is there any progress on your quest for an appointment?

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Sorry just saw this, yes I am miserable , my knees hurt so bad its hard to make it through the day, at night the cramps are enough to make you cry, still trying to get into SLU but there is a huge disconnect between doctors and fax machines, one knee I could understand but both and my joints are just so bad, I am getting a CT scan in the morning, guess have to drink some nasty stuff before. I have called thinking 10 times getting Med records sent but it must take a act of God, now this week suppose to get up to 18 inchs of snow which is not fun even when I felt good lol, thinking doctors are like weather people, most the time full of crap !!! Sorry to be so down but I find the whole thing amazing ! MJ

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After reading of Bildad's and Mikej's experience with liver transplant and new "normals", I realize how very fortunate I have been. Immediately post-transplant, for me, almost everything that could go wrong, did go wrong: pleural effusion, pulmonary emboli, atrial fibrillation, ileus. I was a mess! But my amazing team at Mayo Jacksonville worked together like a well-oiled machine to help me pull through. My new "normal" is miraculously good, particularly compared with where I started. I'm sorry that you haven't had a similar experience and the only suggestion that I can come up with is that if you are unhappy (which seems to be your common theme) with the coordination and quality of your care, seek a new treatment team, one that coordinates efforts and doesn't play games but focuses on the patient's needs. I'm obviously very prejudiced about the care I received at Mayo, but I'm sure there are other institutions which have great patient-centered care. Find one. And the very best of luck to you both.

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@mikej

Sorry just saw this, yes I am miserable , my knees hurt so bad its hard to make it through the day, at night the cramps are enough to make you cry, still trying to get into SLU but there is a huge disconnect between doctors and fax machines, one knee I could understand but both and my joints are just so bad, I am getting a CT scan in the morning, guess have to drink some nasty stuff before. I have called thinking 10 times getting Med records sent but it must take a act of God, now this week suppose to get up to 18 inchs of snow which is not fun even when I felt good lol, thinking doctors are like weather people, most the time full of crap !!! Sorry to be so down but I find the whole thing amazing ! MJ

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@mikej , Good Morning, Mike. My thoughts are with you as you are either on the road or into the CT process. We would be shut down here if we had 18 inches of snow. Hope the travel was okay.

Mike, I feel your frustration with the medical records issue. Unfortunately the staffing is low and slow, but no excuse for such a difficult time getting your records. What I have had to do on occasion is to visit my local hospital records department and to personally request, and then wait for the records to be handed to me. I can then deliver them to where they need to be via whatever the new provider requests. and I keep a copy for myself, too.

Mike , have you tried to contact the records department yourself?
When will you get results or follow-up of the CT?

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