I have been thinking about all of you in this discussion about experiences with tremors, Tacrolimus, mouth sores, anticipated hernia surgery. I hope that this messages finds you making progress in dealing with your unpleasant conditions and finding solutions.
@jackie421blfdgurl, Is your surgery still going to happen as scheduled? What have you learned about the procedure that will help reduce your previous fears and concerns?
@athenalee, How are you and the tacrolimus (or substitute) getting along? Have you learned whether the tacrolimus was the culprit in your situation?
@terry14, Did you get to meet with the doctor and find out anything about your possible surgery for hernia? Will the surgical team be in communication with your transplant team?
I don't know if I ever shared this, but a month after my 1st annual evaluation, where everything checked out perfectly, I needed a hernia surgery. In my situation, my bile duct connection to my small intestine found small space and got kinked. This forced some bacteria backwards into my liver/blood stream causing sepsis. Fortunately my local hospital identified the bacteria and the correct antibiotic was administered. My local hospital communicated with my Mayo doctors while I was in the hospital here. When I was out of danger, and ready to travel, my husband and I went to Mayo where they were able to diagnose the problem (as described above). My surgery was nonemergency, and it was my transplant surgeon who performed the surgery. That was 11 years ago.
Hi Rosemary, thanks for asking. I am wait listed for robotic hernia repair by a general surgeon chosen by my Transplant Team. Because of Covid the wait time here for non-urgent surgery is longer than usual. The surgeon said he really hopes he's successful wth the robotic repair because it would be so much safer and less risk for infection, etc. but the CT is showing a lot of scar tissue and he warned he may have to finish by doing an open repair.
I'm on Sirolimus which is known to impair wound healing so the surgeon is worried I'll have further difficulties healing after a repair. I can't take Tacrolimus so it doesn't leave my team many options, but I trust they will make the best decision for me.
I just hope in the meantime, the hernia doesn't incarcerate and become strangulated requiring emergency surgery because it would likely mean further repairs down the road. I say that because the umbilical hernia pops out all the time and I have to push it back in. I recently purchased a belt to support so fingers crossed that all continues to go well while waiting 🙂
Hellooo all. Yes surgery is on for June 7...I am still taking tacrolimus
It is everolimus I stopped and so did my mouth soars. Did I learn anything to set myself at ease for this surgery, yea...don't have it
Haha...meeting with gas team this week and Dr. That did my
Transplant is repairing my hernia. A plastic surgeon is sewing up
Stomach skin to muscle, but he is using 2 pieces of mesch. I told
Him about my concerns with all the law suits. But I have trust he
Is aware of this. Hope all is well with you all....
Hello ya all...surgery was June 7. Lot's of pain I wk up 8:30 pm and epidural did not wk.
Took two more days to regulate two pain pumps. Then I was lucky enough to come down with C-Diff..now
On meds and two days now it slowed down ..going home
Tomorrow. Miss my little booboo....🐕..have bathroom on first floor so no need to go
Up stairs a lot...as they say, climbed this mountain.....on to
The next........
Hello ya all...surgery was June 7. Lot's of pain I wk up 8:30 pm and epidural did not wk.
Took two more days to regulate two pain pumps. Then I was lucky enough to come down with C-Diff..now
On meds and two days now it slowed down ..going home
Tomorrow. Miss my little booboo....🐕..have bathroom on first floor so no need to go
Up stairs a lot...as they say, climbed this mountain.....on to
The next........
Sorry to hear you had some difficulties post op, but glad you're on the mend. I hope your repair was a success! Please fill us in further once you're feeling up to it 🙂
Hello ya all...surgery was June 7. Lot's of pain I wk up 8:30 pm and epidural did not wk.
Took two more days to regulate two pain pumps. Then I was lucky enough to come down with C-Diff..now
On meds and two days now it slowed down ..going home
Tomorrow. Miss my little booboo....🐕..have bathroom on first floor so no need to go
Up stairs a lot...as they say, climbed this mountain.....on to
The next........
Hello..you read my mind I was
About to send u a message..had a lot of surgery on tummy. This is a very difficult area to heal from,
Getting out of bed sitting up..
All..but I am off pain pills,
Just Tylenol. Getting better sleep is a challenge, can't
Sleep on left or right, I am not
A back sleeper...NY doctor give me a new pill which I will take with my tacrolimus to
Protect kidneys!!!I walk my dog and aim for 2 to 7 miles
A day..thank u for asking...so
Sweet...
Hey Rosemary, just for information if anyone knows about this drug I am about to go on....Sirolimus,
Twice a day...told my dr, if I start
Getting side effects...then we need to talk..
Hey Rosemary, just for information if anyone knows about this drug I am about to go on....Sirolimus,
Twice a day...told my dr, if I start
Getting side effects...then we need to talk..
@jackie421blfdgurl,
Here is some information for you-
-Transplant Immunosuppression: Watching For and Managing Side Effects https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
Here are some discussion groups that I recommend where you will be in contact with members who are likely to share your medicine concern. If you are directing a question or comment to a particular member, include their @name. As member on Connect, you are welcome to join any of the Connect discussions. Anytime. Anywhere.
Connect
Connect
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Hi Rosemary, thanks for asking. I am wait listed for robotic hernia repair by a general surgeon chosen by my Transplant Team. Because of Covid the wait time here for non-urgent surgery is longer than usual. The surgeon said he really hopes he's successful wth the robotic repair because it would be so much safer and less risk for infection, etc. but the CT is showing a lot of scar tissue and he warned he may have to finish by doing an open repair.
I'm on Sirolimus which is known to impair wound healing so the surgeon is worried I'll have further difficulties healing after a repair. I can't take Tacrolimus so it doesn't leave my team many options, but I trust they will make the best decision for me.
I just hope in the meantime, the hernia doesn't incarcerate and become strangulated requiring emergency surgery because it would likely mean further repairs down the road. I say that because the umbilical hernia pops out all the time and I have to push it back in. I recently purchased a belt to support so fingers crossed that all continues to go well while waiting 🙂
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Helpful -
Hug
2 Reactions@jackie421blfdgurl,
My fingers are still crossed for you. How are you? 🌹
Hello ya all...surgery was June 7. Lot's of pain I wk up 8:30 pm and epidural did not wk.
Took two more days to regulate two pain pumps. Then I was lucky enough to come down with C-Diff..now
On meds and two days now it slowed down ..going home
Tomorrow. Miss my little booboo....🐕..have bathroom on first floor so no need to go
Up stairs a lot...as they say, climbed this mountain.....on to
The next........
-
Like -
Helpful -
Hug
2 ReactionsSorry to hear you had some difficulties post op, but glad you're on the mend. I hope your repair was a success! Please fill us in further once you're feeling up to it 🙂
I’m sorry you’re having post-op issues, but I’m glad you got your much needed surgery! Be good to yourself and cheers to a speedy recovery 💐🌺🌸!
Thank you
@jackie421blfdgurl, I hope that this is a Good Morning for you. How is the recovery coming along?
Hello..you read my mind I was
About to send u a message..had a lot of surgery on tummy. This is a very difficult area to heal from,
Getting out of bed sitting up..
All..but I am off pain pills,
Just Tylenol. Getting better sleep is a challenge, can't
Sleep on left or right, I am not
A back sleeper...NY doctor give me a new pill which I will take with my tacrolimus to
Protect kidneys!!!I walk my dog and aim for 2 to 7 miles
A day..thank u for asking...so
Sweet...
-
Like -
Helpful -
Hug
2 ReactionsHey Rosemary, just for information if anyone knows about this drug I am about to go on....Sirolimus,
Twice a day...told my dr, if I start
Getting side effects...then we need to talk..
@jackie421blfdgurl,
Here is some information for you-
-Transplant Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
Here are some discussion groups that I recommend where you will be in contact with members who are likely to share your medicine concern. If you are directing a question or comment to a particular member, include their @name. As member on Connect, you are welcome to join any of the Connect discussions. Anytime. Anywhere.
-Transplant anti-rejection medications. What's your advice?
https://connect.mayoclinic.org/discussion/your-anti-rejection-medications/
-Liver transplant support group
https://connect.mayoclinic.org/discussion/liver-support-group/
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Helpful -
Hug
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