Want to connect with other post liver transplant patients

Posted by swordfish @swordfish, Aug 25, 2016

Want to connect with other post liver transplant patients

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

@colleenyoung

Karen, I've heard this from several Mayo transplant recipients that they look forward to their annual visits back to the "mothership" to be "mayo-naised" to quote @loribmt. @rosemarya was wise enough to choose a spring date for her annual trip to Minnesota.

What is your favorite thing to do for fun when in Rochester?

Jump to this post

My favorite is to walk all around Downtown Rochester. One walk we went to view the original offices of the Mayo brothers. There are always beautiful flowers everywhere and the plaza is wonderful for people watching. Many nationalities!

REPLY
@karen51

My favorite is to walk all around Downtown Rochester. One walk we went to view the original offices of the Mayo brothers. There are always beautiful flowers everywhere and the plaza is wonderful for people watching. Many nationalities!

Jump to this post

@karen51, Me too! I enjoy walking around near the Mayo Campus and seeing the flowers. I guess that I'm lucky to have had my transplant in April because my annual visit to Rochester is when the blossoms are beginning to show their colors.
I remember my discharge from Methodist Hospital after 2 weeks as an inpatient after emergency admission. My husband rolled my wheelchair into the Gonda Lobby, and I cried. It was such a beautiful experience -emotionally, visually, and auditorily. It is still my favorite place to visit.

REPLY
@rosemarya

@karen51, Me too! I enjoy walking around near the Mayo Campus and seeing the flowers. I guess that I'm lucky to have had my transplant in April because my annual visit to Rochester is when the blossoms are beginning to show their colors.
I remember my discharge from Methodist Hospital after 2 weeks as an inpatient after emergency admission. My husband rolled my wheelchair into the Gonda Lobby, and I cried. It was such a beautiful experience -emotionally, visually, and auditorily. It is still my favorite place to visit.

Jump to this post

There is something about the Gonda Lobby, isn’t there? I get emotional almost every time I walk through there. Especially if someone is playing the piano or there’s a choral presentation. I feel a calmness and an assurance that everything will be ok.

REPLY
@liver2007

Had my transplant over 14 years ago. I just keep gaining weight and I’m very uncomfortable. Liver Dr suggested that I look into having a gastric bypass to help with some of the current issues I’m having. Most people think it works great. I’m just nervous about it and all the restrictions.

Jump to this post

@liver2007, Good Morning, I am wondering how you are feeling and whether you made a decision about having the gastric bypass.
As I read thru the previous conversation here, I can't help myself for smiling because we talked about walking around the Rochester area while visiting Mayo Rochester! I am going to be there in late May and am already looking forward to the sights and sounds. My husband now says (and I agree) that we were lucky to have had transplant in April instead of February when I first arrived to Minnesota.

Liver2007, I would love to hear from you. How are you feeling these days? Have you made any decision yet about the gastric bypass?

REPLY

I am three years post transplant I was wondering if anyone had stomach bowel issues ? I am on prograf. I recently developed diabetes never had bad A1C counts but the month my magnesium went to 1.2 my a1c was 10. I have been on insulin shots for a month but I am wondering if I can get off them. Anybody have any similar experience. thank you

REPLY
@stolson1

I am three years post transplant I was wondering if anyone had stomach bowel issues ? I am on prograf. I recently developed diabetes never had bad A1C counts but the month my magnesium went to 1.2 my a1c was 10. I have been on insulin shots for a month but I am wondering if I can get off them. Anybody have any similar experience. thank you

Jump to this post

@stolson1,
Here is some information that I have located in this Transplant Blog > Immunosuppression: Watching For and Managing Side Effects
I read that - Some of the side effects with tacrolimus (Prograf) are a result of elevated blood levels. I also noticed that among the possible side effects were listed includes high blood sugar levels and also kidney problems.
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/

I do not know the answer to the duration of the insulin. I did have to take insulin for a short time, immediately after my liver and kidney transplant. I have been taking tacrolimus and cellecpt for 13 years, and my transplant team has me get labs and a prograf lab test every 3 months. I guess I'm lucky that readings have been stable. I have seen that some transplant recipients have had to change to a different immunosuppressant medication, as listed in the blog article that I have shared.
Is your prograf level monitored for the best dosage for you? Do you take your immunosuppressant meds as prescribed? Has your doctor suggested any dietary changes/modifications?

REPLY

I have labs every other month and all have been great but magnesium was low. I see my transplant Dr in a few weeks and I am going to talk to him. I am only on prograf for immunosuppressants. Lately I am so tired and feeling depressed thought the tiredness was due to the high sugars before I went on insulin. I am embarrassed that I am even depressed being how appreciative I am for relieving a transplant. Thank you

REPLY
@stolson1

I have labs every other month and all have been great but magnesium was low. I see my transplant Dr in a few weeks and I am going to talk to him. I am only on prograf for immunosuppressants. Lately I am so tired and feeling depressed thought the tiredness was due to the high sugars before I went on insulin. I am embarrassed that I am even depressed being how appreciative I am for relieving a transplant. Thank you

Jump to this post

@stolson1, never be embarassed about feelings, especially feeling depressed. It's an opportunity to explore why. You feeling depressed may be related to fatigue, medication, low blood sugar or other physical influences. You may also be working through some emotions. Being given the gift of life is emotional. Light and dark live together. So can gratitude and sadness.

You may be interested to know you're not alone. Did you see this discussion?
- Feeling depressed 2 years after successful transplant https://connect.mayoclinic.org/discussion/feeling-depressed-2-years-after-successful-transplant/

Please do bring up your feelings of depression when you see your transplant team. I'll be interested to hear what you learn.

REPLY

Would love to speak with other liver transplant patients, I having complications with bile duct issues, very concerned, any one else have bile duct leak and stent post op 5 months

REPLY

Hi, @kandidubrall. I have no experience with a leakage. I see that you are only 5 month post transplant, so I can understand how frightening this must be for you (or anybody) to experience.
Do your doctors think that the stent will resolve the leak? How do they monitor a leak?
-

I have located a member who also has shared that she had a bile duct leak. I hope that @erikaclark will see this and respond. Erika, What is your experience with a bile duct leak?

REPLY
Please sign in or register to post a reply.