Liver
Abdominal Wall Reconstruction
Since so many of you have expressed interest, I thought I'd share the latest installment in my adventures waiting for abdominal wall reconstruction surgery. For everybody that doesn't know, I had 3 major surgeries in 4 days (2 back to back transplants, both liver, and then liver surgery in between), and was in the ICU for almost a month post transplant, so I had a really rough recovery process. For the last year or so I've been dealing with what we thought was a hernia. Turns out I need an entirely new abdominal wall.
We met with an abdominal wall reconstruction surgery yesterday, who is one of the best in the country and is part of a group who is changing how abdominal wall surgery is done in Canada. He was absolutely amazing, not only super knowlegeable but also great patient skills, which is the gold star for doctors in my book. We went over my scans, my symptoms, and he broke down what exactly he sees as whats going on. I thought I'd share if anybody else is in a similar situation, because I know there's a few of us.
So in addition to having a hernia, or a hole in my abdominal wall where my organs are currently coming in and out of, I also have a lot of damage to the nerves and blood vessels running through the area, just because of the sheer amount of surgery I needed during my transplant process. I also had a G-tube for 23 years, which we just learned never healed properly when it was removed. It looks like when I healed from surgery, the amount of surgery i needed, not being able to move after surgery, what happened was everything kind of scarred together. This surgeon I saw said there's also probably some intense narrowing of my intestines going on due to the amount of scar tissue. He showed me on the scans exactly where you can see things scarring, and the area where i have no abdominal muscles.
Repairing it is going to be a tricky thing, a lot of that having to do with how everything scarred together wanting to make sure things that aren't scar tissue aren't being cut, not wanting to create more incisions than we have to... I'm going to get a prosthetic abdominal wall, which is currently what we're waiting on to be done being made in a lab, which is super cool and high tech if you think about it and also I'm ready for it to be done growing and for the surgery to happen already.
It's an exhausting process, as I'm sure you all can relate to in some form, but its a huge relief knowing I have such an amazing team advocating for me during this entire process
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I have an umbilical hernia and it’s (sorry to gross you out) the size of a baseball. No doctor would touch it when I’m dealing with cirrhosis. It hurts to lay on my stomach or wear pants and it will bleed because of that. I’m interested in your follow on this post. I pray the best for you!!!!
Thank you so much for the update! I've been waiting to hear how it's going for you. This is such an important topic for those of us with major abdominal surgeries like this. Sending love from Ohio that things continue to go smoothly.
That's terrible. But important to share because this is reality for so many of us with big surgeries. Keep us posted on you too!
Transplant Patient
I'm so sorry you're also going through this, it sucks. I heard virtually nothing about any of it until it happened to me.
Wearing clothes is the biggest challenge. I find I need the compression, but if I have anything against it for too long it just creates more issues.
Keep us posted on how things go with you
I have already had my AWR. Nothing compared to yours. I wish u the very best w/your next journey I know it’s going to be a big challenge.
keep us posted on how u are doing.