Post Transplant - Core numbness and weakness

Posted by mellow123 @mellow123, Mar 29, 2021

Hello. I’m 9 months post-liver transplant . Im challenged with a couple of physical things. First, the numbness in my abdomen area. Parts of the numb area are gradually regaining feeling, but I know to expect that some of the area will remain numb indefinitely so I’ll learn to accept that.

My biggest challenge is my core strength, stability, and flexibility,I realize it’s significant that they sliced my abdomen muscles to get to my liver, but 9 months later It still feels like I’m walking around with some 30 pound mass in my core, can lose my balance ( thsts greatly improving! , and it generally feels like my abdomen muscles are almost dead or inactive.
Is this normal? How long should the healing process take until I can walk around normally without being reminded that I had major surgery in my abdomen?

Thanks

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Hi everyone!! Thank all of you for the personal messages, words of advice and inspiration, hugs, likes, etc! You really know how to make a man feel welcome.

@rosemarya thank you for your welcoming message, and as requested, here’s a short bit of my journey. It all began in October of 1977 when Keith entered the world… just kidding I won’t go that far back.

So I was originally diagnosed in 2019. For the first couple years we managed things with medication and some lifestyle changes, but last year during my relocation from Florida to Colorado things started going downhill. We’ve all been there. My husband used to find me curled in a ball on the bathroom floor crying in pain and trying to deal with the nausea. I immediately got affiliated with the best rated transplant program in CO. My very first visit he immediately said we needed to move quickly as my meld score was around 30. All of our appointments were centered around talking about getting ready for “the call” and then quickly jumped to talking about 6mnths or 1yr post op. No one ever really spoke about those first few weeks. Then 3-4 weeks after getting listed, we got the first call… in the middle of dinner… “can you be at the hospital in the next hour?” We ran around the house like maniacs, grabbing papers, living will because I was scared stiff that I might not wake up. Things like that. Fast forward after sitting at the hospital for 5hrs or so, I was fully prepped. Then… nobody had ever mentioned that they call in a standby. I was actual option two… a nurse casually walked in and said I could go home that they went with the other person. Fast forward that happened twice more before it was officially my turn! On august 18th I was getting my chance at life! I remember being so annoyed with the standby letdowns that I said to the lady on the phone “is this actually my turn or am I standby again…” don’t worry I later apologized to her for being rude.

So now he we are… I’m going through my call list letting remote friends and family what was happening, before turn to my spouse in tears and apologizing to him for having to go through this. The guilt was intense. The world wind of emotions was out of control… being excited for my new life, but being scared out of my mind. Celebrating that gos was giving me a second chance but feeling said for the family that just lost their spouse/dad/uncle/grandpa etc. they were experiencing unimaginable grief how can I be happy?

So fast forward a day, and I wake up in ICU and they take out my breathing tube… luckily I was still pretty doped up. I had some mass of tubes coming out of my jugular… again we’ve all been there. Fast forward by week two they started talking about sending me home. And everyone telling me they were speechless and I was officially breaking the hospital record for fastest discharge. PT was working wonders everything was falling into place. The nights of laying in bed screaming and crying in pain but having maxed out my pain meds for the day were not happening as often. I go home… 3 days later, after getting used to my eyes and skin being white again I woke up went to brush my teeth and tweety bird was back. That brought me to read mission 1… this went on for weeks/months… go home 2,3,4 days later, back in… which bring us to last week (readmit #4)… debilitating abdominal pain. Started having trouble walking again, GGT jumped 300pts in 2 days INR over 4… was I in the twilight zone? So last week they sent me for two days of tests… CTs, MRI, bile duct stent replacement #4, and a liver biopsy on this past Friday. Then yesterday I got a call from my coordinator. Surgeon moved my clinic appt from this Friday to today… 30min before the office even opened but he needed to see me today. So here I am… admitted again… more tests, only this morning urgent meeting start by being told “please hear everything I have to say before you get emotional” followed with “you are going into rejection.” Of course I started crying, not fully knowing what it actually meant but turn to my other half and asking him if he remembered where I put the life insurance papers, the final will, the power of attorney. I was just waiting for the words to come out of their mouth. Luckily it turns out that it’s almost always treated with some meds and inpatient procedures. But I’m sure we all know how the steroids make us emotional… I have been riding the roller coaster for awhile now. So tomorrow they removed my PICC line, putting in a durable chest port, and we get to work on the treatments. From what I’m being told the biggest challenge I should be thinking about is how to gain back some of the 105lbs I lost between my rebirth and today.

Sorry for the lengthy story. I tried to keep it as short as possible. I’ll keep you guys posted through this latest adventure in my recovery. And I promise no more long posts!!

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I am so incredibly sorry that you are going through this!!! It can be a frustrating journey. I certain understand what you are experiencing. I’m five months post and have been in the hospital on three occasions since transplant. I have chronic itching which causes much pain. I’m steadfast, as I know you are as well, that much brighter days are in my future. So virty thankful for the new life I have been given!

What is your current GGT? Mine was 1519 last week and the docs cannot figure out why.

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@crystalfaye

I am so incredibly sorry that you are going through this!!! It can be a frustrating journey. I certain understand what you are experiencing. I’m five months post and have been in the hospital on three occasions since transplant. I have chronic itching which causes much pain. I’m steadfast, as I know you are as well, that much brighter days are in my future. So virty thankful for the new life I have been given!

What is your current GGT? Mine was 1519 last week and the docs cannot figure out why.

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1500?!?! Wow… I am so sorry you are dealing with that!! Mine is almost 600 right now, and it’s gone up on my last 3 sets of labs.

I agree with you though, I have to believe there are brighter days ahead but I’m still in a crazy emotional headspace right now. 🙁

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@keithjp77

1500?!?! Wow… I am so sorry you are dealing with that!! Mine is almost 600 right now, and it’s gone up on my last 3 sets of labs.

I agree with you though, I have to believe there are brighter days ahead but I’m still in a crazy emotional headspace right now. 🙁

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@keithjp77, I am sorry that I have not responded. I am scrolling thru support group poste this evening, and I came op on your earlier post where you shared your transplant experience. I think that you posted right about the time that my husband and I were having computer issues.
You have had more than your share of dark days and I hope that you are seeing some good test results and that you are moving forward with your recovery and regaining your strength.
How are you getting along?

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@rosemarya

@mellow123, I would like to ask you how you are getting along since you last posted here about your transplant recovery.

Have you noticed any changes in regard to the numbness in your abdominal area?

And what about your core strength, stability, and flexibility? Others have offered their experience about what has worked for them after their transplant surgeries. With your doctor's permission, did you find a way to increase and improve your post transplant progress?

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Hi. It’s been a while, but unfortunately I still have the issue. I was sent to a physical therapist who gave me some micro needle treatment, thinking it might be scar tissue blocking my abdomens ability to function properly. That helped a little. I have my balance, but I still feel the stiffness when I stand. The best way to describe it, other than saying I’m carrying around a30!pond mass, is i get a constant feeling just as if I’m in the middle of a sit-up or crunch. That’s just standing. I’m trying to do actual crunches in the morning and do more walking. But, 4 years later, I still have same issue. I’m wondering if it’s because of all the nerve damage that’s causing my abdomen muscles to not reform or function correctly . I’m not sure what else I can do other than hope it improves over time, but I’m 62 and kbow age will not make it any easier

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@mellow123

Hi. It’s been a while, but unfortunately I still have the issue. I was sent to a physical therapist who gave me some micro needle treatment, thinking it might be scar tissue blocking my abdomens ability to function properly. That helped a little. I have my balance, but I still feel the stiffness when I stand. The best way to describe it, other than saying I’m carrying around a30!pond mass, is i get a constant feeling just as if I’m in the middle of a sit-up or crunch. That’s just standing. I’m trying to do actual crunches in the morning and do more walking. But, 4 years later, I still have same issue. I’m wondering if it’s because of all the nerve damage that’s causing my abdomen muscles to not reform or function correctly . I’m not sure what else I can do other than hope it improves over time, but I’m 62 and kbow age will not make it any easier

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I have scar tissue from the surgeon pulling out the Peritoneal catheter during surgery. They said it would dissolve and it did not. I have having pain all year from this. I am glad it lessens with walking. I walk 1-2 miles every day. I also get Myofacial Release Physical Therapy weekly and that seems to help very slowly heal the nerves over time. It is a very slow process and I wish my surgical team had told me that this scar tissue would most likely happen. All the best to you and seek out the best physical therapy you can find and walk! Movement is the key for me.
BB

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I really appreciate each of you sharing and hope and pray for continued healing and improvement for each of you!! I think it helps to just know someone else has gone through a similar experience and we can cheer each other on! Keep up the good work!!

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