Incisional hernia after transplant: Anyone else?

Posted by btwest6 @btwest6, Dec 26, 2020

Would be interested to hear others experience with incisional hernia after liver transplant. Thank you.

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

@jackie421blfdgurl

Hello…My liver transplant was in October 2020, I noticed my stomach above my bellybutton
Was getting big and discovered the lump by my liver area about end of January/or first two
Weeks in February. No pain, no other body symptoms. I had an mri and dr who read xray said
I had a Sonoma. Met with my surgeon after she read the disk that is when she told me about
The hernia. I have to wear a tight elastic wide band around my stomach which feels better
Than not wearing one. Needless to say I need surgery but doctor wants to wait till I reach my 6 mo mark. Not happy to think I need to go back.

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@jackie421blfdgurl, How are you getting on while waiting for your surgery?

You mentioned in another discussion that you needed daily naps and I want to share that I also needed naps in the afternoon. Gradually my naps became shorter, and then not necessary everyday. However, I always permit myself to a good nap when my body tells me to slow down. Even now, after 12 years since my transplant and recovery, I like to treat myself to a good nap, sometimes I even plan my daily activities around it! I hope that you are also able to work a nap into your day when you feel you need one. I wonder if your energy will pick up after your hernia repair and recovery.

I had a surgical procedure at my transplant hospital after my 1st year of transplant. I was treated by my transplant team as they were the ones to diagnose my problem. My transplant surgeon was even the one who performed the surgery, and that made me real comfortable going into it. A real treat for me was to re-connect with some of the nursing staff on the transplant floor! It was like a reunion because I had spent so much time on that floor before and during my transplant. We had a few days to catch up on big events like my recovery and adventures, marriages, babies, etc.

I am sending my thoughts and wishes for a successful surgery and a comfortable recovery. I am here if you would like to chat or if there is any way I can help you to prepare for your visit.
Will your surgery be at your transplant hospital while you are doing your check up? Will you be able to have someone with you?

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Hello my angel…thanks for your reply.
Yes my surgery will b at same hosp I had my transplant, and same surgeon
Will do surgery as she did for my transplant. I go back to NY in May for
A MRI on belly then surgery will b
Scheduled after that I assume. I am writing a letter to the surgeon with my wishes such as no tubes in throat after I come out of surgery, I want to talk this time, and stop giving me Tylenol
For any pain…does not work on me .
And I come home in 5 days ..not
negotiable ! I am trying to state my
Concerns, like I was blindsided the
First time waking up not being able to talk for a week and my stay 2 months…bullcrap to it all…yes my brother will take me and maybe one of my friends too. But I have my little
Fur love home so my brother needs to
go back and take care of my fur baby
As long as I can talk and have my phone I will b fine….. thanks again🤗
Jackie

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@jackie421blfdgurl

Hello my angel…thanks for your reply.
Yes my surgery will b at same hosp I had my transplant, and same surgeon
Will do surgery as she did for my transplant. I go back to NY in May for
A MRI on belly then surgery will b
Scheduled after that I assume. I am writing a letter to the surgeon with my wishes such as no tubes in throat after I come out of surgery, I want to talk this time, and stop giving me Tylenol
For any pain…does not work on me .
And I come home in 5 days ..not
negotiable ! I am trying to state my
Concerns, like I was blindsided the
First time waking up not being able to talk for a week and my stay 2 months…bullcrap to it all…yes my brother will take me and maybe one of my friends too. But I have my little
Fur love home so my brother needs to
go back and take care of my fur baby
As long as I can talk and have my phone I will b fine….. thanks again🤗
Jackie

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It sounds like you were hit with some unplanned surprises after the transplant surgery. Were there complications involved with the surgery that caused the necessity of such measures for your recovery? When I went in to surgery I had been forewarned that sometimes interventions could be involved.

Please don't fight the tubes. They are there for your health and safety. We are all different and thank goodness that our transplant team recognizes that.
I learned to text on my flip phone when I was in the hospital. And when my strength returned, I enjoyed the laptop which had previously been too heavy for my lap before the transplant.

Hope all goes smoothly for you. Be kind to yourself, and hope that you get lots of rest. My mom used to tell us kids, that we healed while we rested.
I'm available anytime if you want to chat or if you need a shoulder to lean on.

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@rosemarya

It sounds like you were hit with some unplanned surprises after the transplant surgery. Were there complications involved with the surgery that caused the necessity of such measures for your recovery? When I went in to surgery I had been forewarned that sometimes interventions could be involved.

Please don't fight the tubes. They are there for your health and safety. We are all different and thank goodness that our transplant team recognizes that.
I learned to text on my flip phone when I was in the hospital. And when my strength returned, I enjoyed the laptop which had previously been too heavy for my lap before the transplant.

Hope all goes smoothly for you. Be kind to yourself, and hope that you get lots of rest. My mom used to tell us kids, that we healed while we rested.
I'm available anytime if you want to chat or if you need a shoulder to lean on.

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Yes, my experience at the hospital was not pleasant at all. Because I could not talk, it was horrible when I needed to tell nurse something and it took a long time to get me a pad so I could write. I fell out of an ICU bed hooked to tubes all over me, hit my head really hard but if u roll out of bed how does one land flat on the back of my head? I had
A big lump for two weeks I could not lay flat on my head, had to have a roll up towel in back of my neck….flat foot I developed in there is really dangerous for me
Have to walk with a cane,getting a brace in a few days, cause if my foot and ankle giving out,I fell
Last Sunday pretty bad had to go to hospital cause my nose was so
Big and out if wack thought it broke, face looks like someone hit
Me with a baseball bat !!! Some
Nurses should b working in a junk yard. I wrote a letter of complaint
Especially on my fall,want to know who was the nurse on duty,happened around 11:30pm.so I am very nervous about going back,but if I have any problem I
Want to b able to speak up for myself…..have to b your advocate
Or have someone there with u

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@jackie421blfdgurl

Yes, my experience at the hospital was not pleasant at all. Because I could not talk, it was horrible when I needed to tell nurse something and it took a long time to get me a pad so I could write. I fell out of an ICU bed hooked to tubes all over me, hit my head really hard but if u roll out of bed how does one land flat on the back of my head? I had
A big lump for two weeks I could not lay flat on my head, had to have a roll up towel in back of my neck….flat foot I developed in there is really dangerous for me
Have to walk with a cane,getting a brace in a few days, cause if my foot and ankle giving out,I fell
Last Sunday pretty bad had to go to hospital cause my nose was so
Big and out if wack thought it broke, face looks like someone hit
Me with a baseball bat !!! Some
Nurses should b working in a junk yard. I wrote a letter of complaint
Especially on my fall,want to know who was the nurse on duty,happened around 11:30pm.so I am very nervous about going back,but if I have any problem I
Want to b able to speak up for myself…..have to b your advocate
Or have someone there with u

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@jackie421blfdgurl, I have not forgotten about you. I just hope that by now that you are recovering and did not have any of the complications that you feared.
Did you get to have the surgery and how did it go for you?

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@rosemarya

@jackie421blfdgurl, I have not forgotten about you. I just hope that by now that you are recovering and did not have any of the complications that you feared.
Did you get to have the surgery and how did it go for you?

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Thanks for your note. Surgery is set for
June 7th.but right now I am dealing with
Horrible painful cold sores/blisters on my
Bottom lip and some on my tongue, can't
Talk or eat drink thru a straw on side of my mouth. Put Vaseline on lip,mixed with
Ambesol, and ice cubes.tyleno. Nothing helps! H E L P…Dr. is aware.My tacrolimus
Has been dropped from 14 1mg pills a day
To 8 pills a day 4 and 4. OUT OF MY mind
Thanks…jackie

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@jackie421blfdgurl

Thanks for your note. Surgery is set for
June 7th.but right now I am dealing with
Horrible painful cold sores/blisters on my
Bottom lip and some on my tongue, can't
Talk or eat drink thru a straw on side of my mouth. Put Vaseline on lip,mixed with
Ambesol, and ice cubes.tyleno. Nothing helps! H E L P…Dr. is aware.My tacrolimus
Has been dropped from 14 1mg pills a day
To 8 pills a day 4 and 4. OUT OF MY mind
Thanks…jackie

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@jackie421blfdgurl, I am so-o-o sorry to her of this miserable condition that you are experiencing.
I am a patient like you, and I take Tacrolimus as one of my immunosuppressant medications. When my tacrolimus doses are changed it is in small increments. And I have to repeat my labs in order to monitor the effectiveness of the change.

Is there a reason, that you know of for the big change in Tacrolimus doses?
According to your words, "Out of my Mind", I can only try to imagine your misery. I highly suggest that you contact with the doctor or pharmacist about what you are experiencing? Does that sound like something you can do?
Oh – and also mention the cold sores. You might need a prescription medication if there is any infection involved.

Will you let me know if you get an answer or any relief?
Hugs,

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@jackie421blfdgurl

Thanks for your note. Surgery is set for
June 7th.but right now I am dealing with
Horrible painful cold sores/blisters on my
Bottom lip and some on my tongue, can't
Talk or eat drink thru a straw on side of my mouth. Put Vaseline on lip,mixed with
Ambesol, and ice cubes.tyleno. Nothing helps! H E L P…Dr. is aware.My tacrolimus
Has been dropped from 14 1mg pills a day
To 8 pills a day 4 and 4. OUT OF MY mind
Thanks…jackie

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I’ve had oral ulcers for three months, nystatin helped a little, but they come back worse. I’ve started rinsing with warm salt water and swishing a few drops of tea tree oil in a little water (don’t use full strength). It seems to be helping so far. I hope you find relief soon!

REPLY
@jackie421blfdgurl

Thanks for your note. Surgery is set for
June 7th.but right now I am dealing with
Horrible painful cold sores/blisters on my
Bottom lip and some on my tongue, can't
Talk or eat drink thru a straw on side of my mouth. Put Vaseline on lip,mixed with
Ambesol, and ice cubes.tyleno. Nothing helps! H E L P…Dr. is aware.My tacrolimus
Has been dropped from 14 1mg pills a day
To 8 pills a day 4 and 4. OUT OF MY mind
Thanks…jackie

Jump to this post

Hi, I've been reading on this site for several months and have learned a lot, but have not commented before. I wanted to pass this on because it helped me tremendously and I sympathize with anyone who suffers with painful sores.

I developed mouth sores on my lower gum and the underside of my tongue 4 months post transplant. They are extremely uncomfortable and make it difficult to eat and sleep. The doctor advised me that mouth sores can be a side effect of both Sirolimus and Mycophenolate that I'm on and ordered Oracorte 0.1% (the tube says Triamcinolone Acetonide Dental Paste USP, 0.1%). It is a thick ointment that you dab directly onto the sores. Seems to have an analgesic effect once applied as well. Clears the sores up within a few days. Now at the first sign of a sore developing, I apply the ointment and it clears up right away.

The doctor said they're not cold sores because cold sores don't develop in the mouth, they develop on the lips or other mucous membranes. Cold sores are a form of herpes and require an antiviral like Zovirax cream/ointment or oral medication. I have a history of cold sores going back many years and surprisingly haven't developed any since being on immunosuppressants. I do have a tube of Zovirax on hand since I can recognize a cold sore if I get one and will treat accordingly.

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