Liver
Post LT abdominal swelling
January 26, 2023
in Liver
I’m about 45 days post liver transplant. I never had major swelling prior to transplant. Yesterday, they did a removal of over 6 liters! Yikes! Now the mri shows different fluid buildup and deposit. Sooooo, more testing! They are doing a sedated neck vein liver biopsy. And other ultrasounds and cts. Anyone ever experience this? They mentioned having to possibly stint and other procedures my mind couldn’t remember due to emotions. Anyone go thru this? I’m so nervous.
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Transplant Patient
@kowalskik I'm glad you shared what's going on! I didn't have edema (fluid weight) post-transplant, but I've had a neck vein liver biopsy and several stints in my bile ducts.
It's ok to be nervous. We always are when we face new unknowns. I encourage you to sit with your emotions and welcome them, and then jot down a list of questions or thoughts you'd like to go over with the doctor/team prior to any procedures.
You're the only person who takes care of all of you, so don't be afraid to ask for clarity until you understand what's going on?
Keep us posted!
My son had abdominal swelling, ascites, with tons of fluid output for the first few months post transplant. He had a partial liver and the had a leak in his lymphatic system. He had to go completely off all fats to try and heal it.
I'm not sure this is the same thing you are experiencing but hopefully as your body heals the fluid retention will go down too.
kowalski “oh no my friend” I am sorry to hear this. They r having to do neck vein biopsy b/c of the fluid on your belly. I was able to keep my fluid under control w/diuretics so I cannot comment on fluid removal🙁 they will place stents to keep the fluids not backing up in the liver so u won’t get sicker.
I have had the stents early in my TP but I am well now. So like brookeguarrd it’s ok to be nervous, cry the unknown like she said is scary. Your team is there to get u well. Unfortunately this is all apart of TP and a lot have to go thru this. 😢
Sending u lots of 🤗 hugs🙏🏻❤️❤️. We r here for u always..
melsamm🐶🐾💕
Thank you everyone. I just feel like every turn I make, I’m faced with more bad news. I’m scared. So so scared. No explaining will make it better. I wish it were done already. but that makes me think it will lead to other more painful stuff. Thus, I cry. I feel defeated.
We too had a really tough time post transplant. In fact, I donated to my son right before thanksgiving. We were on the news to give thanks for this miracle and I felt like a fraud because I knew the next day we were going back to the hospital for a biopsy because everything was not great right out of the gate after transplant. I didn't know how long we would be hospitalized and how long the swelling and fluid would remain. It was so bad that the fluid was up and around his lungs.
In the moment is so hard. Take some deep breathes. Try to relax or do some meditation. Try to find things you are grateful for. It is so hard. I had many months where I lived in fear until one day I had had enough and needed to shift my perspective to faith/love. I wanted that organ to work so badly for my son that fear took over.
Hope and pray things get better.
Transplant Patient
i had a lot of swelling and fluid, had stents placed before I woke up (I was sedated for almost a month post surgery due to complications) and then more in the months that followed.
it can be so scary, and frustrating. I remember thinking I’d already gone through so much and not having this liver “work right” felt like a huge failure. Your feelings are totally valid.
i wish I could say you do this and then it gets better. There are no guarantees. What I can tell you is that you can do hard things. You have the musculature for this. And your community is here to support you every step of the way
Authticallyapril,aliEm,
I totally agree w/u. Even tho their were days I felt horrible after my LTP I would always say and think of my donor and his family b/c I remember the day for always they lost a son so that I could live. holding my Dads hand as we cried for them. We were so happy/sad that day for sure. Yes all feelings are valid but u cannot give up. 💚💚🌼
I’m now at the Mayo Clinic waiting for stints or something they find regarding arterial flow. I’m terrified. They gave me a drip of heparin and I’m waiting for the groin procedure. I’m a nervous, blubbering mess. They did 3 drains on me this past week. I pray all goes well
Transplant Patient
Oh my friend, I'm sending you all the good vibes. I know its so overwhelming and scary. I had the same procedure about a year post transplant, and if it is of any help it was far worse in my head than it was in reality. Please know you're not alone and we are here to support you every step of the way
Hi my friend,
I had to have 2 stents post TP to, like AliEm14 it was far more worse in my head. I to was like u terrified, the unknown!! Just know they r doing this to help u get better.
Sending u ❤️❤️ 🙏🏻🙏🏻’s we r all here for u always always..
melsamm🐶🐾💕
I'd love to back track on this conversation and talk about all the reasons the stents were needed. I know because of fluid build up. We have some narrowing of veins and arteries around the liver and they talked about putting a stent in as a "Last ditch effort" to save the liver/kidneys. It was terrifying to talk about and then they eventually decided the body was rerouting the way it was meant to and they weren't going to do anything.
Why does everything have to be up in the air all the time!
What are the updates on your procedures? Did all go well? We are routing for you.
Transplant Patient
@kowalskik , I'm so sorry to hear that your dealing with ascites issues. It's definately not fun & uncomfortable too. Operating with excess fluids on board is so unbearable & difficult. During my transplant journey I did have to deal with this issue. Like you, I was scared & nervous. That said, I'm sure your care team is on the job & they will figure out everything via all sorts of testing.
You're not alone. Hang in there & please do send updates. Sending you positive vibes & prayers too. 🙏 Best of luck!
Agree Sydney.. I to dealt w/this and thought it was a nightmare. I know your team will take good care of u kowalskiki😊😊 they are experts on this . Don’t give up we r all here for u..
❤️❤️❤️🙏🏻
melsamm🐾🐶🌼