Thanks for your info. I tried to gargle with water n baking soda..
Yikes it burned. I am still on
Tacrolimus I was taken off everolimus. My soars r clearing up
I finally ate food ..first time in 23 days. My doctor gave me this prescription for my mouth, it helped..lidocaine in it, malanta, and
Antihistamine. The name on bottle
Is Lido/mdryl/,gerilanta..took pain
Away.msyb it will help...take care
Hi girl...I drank protein drinks
Hi in protein, ensure..and others. Now that I can eat I do
Need to b careful what I put
In my mouth, or belly will suffer....it...I will.... lost an
Additional 12 lbs..as Rosanna
Danna use to say... it's always
Something
Thanks for your info. I tried to gargle with water n baking soda..
Yikes it burned. I am still on
Tacrolimus I was taken off everolimus. My soars r clearing up
I finally ate food ..first time in 23 days. My doctor gave me this prescription for my mouth, it helped..lidocaine in it, malanta, and
Antihistamine. The name on bottle
Is Lido/mdryl/,gerilanta..took pain
Away.msyb it will help...take care
Thank you for sharing, I’ll add it to my treatment list. I hope you’re mouth continues to heal, so you can eat! I’m glad you’re drinking protein shakes. I do a nondairy, no sugar protein powder called Orgain. It saved me while I had no appetite and had lost a lot of weight after my transplant surgery.
Thank you for sharing, I’ll add it to my treatment list. I hope you’re mouth continues to heal, so you can eat! I’m glad you’re drinking protein shakes. I do a nondairy, no sugar protein powder called Orgain. It saved me while I had no appetite and had lost a lot of weight after my transplant surgery.
Ok..I will put that protein drink
On my list..boy ! This is fun
Sharing back n forth...like 13 yr olds...makes me young...but
We should b sharing where the good deals r like shoes. Bags.etc...have good day
Ok..I will put that protein drink
On my list..boy ! This is fun
Sharing back n forth...like 13 yr olds...makes me young...but
We should b sharing where the good deals r like shoes. Bags.etc...have good day
Not sure you’d find my fashion advice helpful…I’m usually attired in tennis shoes with tie die shoe strings or Ugg’s for the winter. But, I’m always up for sharing information and experiences!
Not sure you’d find my fashion advice helpful…I’m usually attired in tennis shoes with tie die shoe strings or Ugg’s for the winter. But, I’m always up for sharing information and experiences!
Haha..me too I left the hospital with a dropped foot
Sneakers is it for me..I look
At my beautiful heals in my closet and don't ask me why I
Still have them...hopeful!!
Have a good day
Rosemary, Volunteer Mentor | @rosemarya | May 31, 2021
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.
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....
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.
Thank you for thinking of us Rosemary. I’ve been able to reduce Tacrolimus from 8 mg to 6 mg/day, with an increase of Mycophenolate to 4,000 mg/day. Both my transplant doctor and neurologist I saw do not believe my tremors are due to Tacrolimus.
My neuropathy symptoms now include numbness in both legs and feet, tingling and stiffness in my hands, moderate to high pain in my back, other muscle and joint pain, fatigue. I tested positive for Sjogren’s, which can be ancillary to PBC, and I just saw a PA in Rheumatology. I’m also seeing a hematologist this month as I’ve got some other weird indicators in my blood.
Certainly not what I was expecting after nearly dying a couple times due to liver disease and being blessed with a transplant. On the plus side, my hair stopped falling out!
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....
Connect
Connect
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First time to eat in 23 days! How are you supplementing your nutrition? What has this done to your weight?
Gentle hugs to you.
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Helpful -
Hug
1 ReactionHi girl...I drank protein drinks
Hi in protein, ensure..and others. Now that I can eat I do
Need to b careful what I put
In my mouth, or belly will suffer....it...I will.... lost an
Additional 12 lbs..as Rosanna
Danna use to say... it's always
Something
-
Like -
Helpful -
Hug
1 ReactionThank you for sharing, I’ll add it to my treatment list. I hope you’re mouth continues to heal, so you can eat! I’m glad you’re drinking protein shakes. I do a nondairy, no sugar protein powder called Orgain. It saved me while I had no appetite and had lost a lot of weight after my transplant surgery.
Ok..I will put that protein drink
On my list..boy ! This is fun
Sharing back n forth...like 13 yr olds...makes me young...but
We should b sharing where the good deals r like shoes. Bags.etc...have good day
-
Like -
Helpful -
Hug
1 ReactionNot sure you’d find my fashion advice helpful…I’m usually attired in tennis shoes with tie die shoe strings or Ugg’s for the winter. But, I’m always up for sharing information and experiences!
-
Like -
Helpful -
Hug
2 ReactionsHaha..me too I left the hospital with a dropped foot
Sneakers is it for me..I look
At my beautiful heals in my closet and don't ask me why I
Still have them...hopeful!!
Have a good day
-
Like -
Helpful -
Hug
2 ReactionsI 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.
-
Like -
Helpful -
Hug
4 ReactionsHellooo 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....
-
Like -
Helpful -
Hug
3 ReactionsThank you for thinking of us Rosemary. I’ve been able to reduce Tacrolimus from 8 mg to 6 mg/day, with an increase of Mycophenolate to 4,000 mg/day. Both my transplant doctor and neurologist I saw do not believe my tremors are due to Tacrolimus.
My neuropathy symptoms now include numbness in both legs and feet, tingling and stiffness in my hands, moderate to high pain in my back, other muscle and joint pain, fatigue. I tested positive for Sjogren’s, which can be ancillary to PBC, and I just saw a PA in Rheumatology. I’m also seeing a hematologist this month as I’ve got some other weird indicators in my blood.
Certainly not what I was expecting after nearly dying a couple times due to liver disease and being blessed with a transplant. On the plus side, my hair stopped falling out!
-
Like -
Helpful -
Hug
2 ReactionsGlad your mouth sores have gone away! Sounds like you’re in good hands with your pending surgeries. Best wishes and stay positive!
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1 Reaction