Newby: Liver transplant success, complications due to pleural effusion

Posted by bildad @bildad, Jan 5 10:13am

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 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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