Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

@jws10

Hi there.
I'm located in Toronto. Had a liver transplant 4 months ago at Toronto general hospital part of the UHN. Is that where you are being looked after? I have plenty of great feedback.

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@jws10 hello, I am in London and received my care and transplant here at University Hospital. They have an amazing program and I'm lucky to be with top professionals. I received my liver November 28th, 2018.

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@jws10

Hi all,
I am 35 year old female, 4 months post transplant. I am very lucky in that everything is going very well, no complications, little side effects, taken off Prednisone after 3 months and my other meds are in low doses.
Other than hair loss and acne (both of which are improving) my greatest concern is joint pain and stiffness. Bone density is normal. RA negative. Never had this problem before and it's getting worse. After sitting for 15 minutes I feel like a cripple trying to stand up. Getting out of bed in the morning is the worst?
Anyone else have a similar experience?

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@jws10, I am happy meet you and to welcome you to Connect. Organ transplant is a beautiful event, and I wish you many happy healthy years to come.
I have lived happily for 10 years with my transplanted liver and kidney. I had to take prednisone after my transplant surgery at a high dose, and it was tapered to a lower dose (5 mg) within the first couple months. I do not recall any difficulty with it. However, due to the kidney's needs, I remained on the 5 mg dose for several years, and still no problems. Then I was given the directions to taper off the prednisone and I had to take it slowly. At first a tiny reduction of 5mg to 2.5 mg daily caused me stiff and painful joints, and made me feel yucky for nearly a week. Then my drop from 2.5 mg to 0 mg did the same thing to my body – stiffness, aches and pains. Some stretching and gentle exercises helped, and I was permited to take tylenol. It was my PCP who suggested me to taper to every other day then every third day…And that worked the best for me when I was at 1.25 mg. (Yes! I did cut those tiny pillsinto 1/4)

I would encourage you to contact yout doctor because, all medicines, especially for us transplantees are specific to our individual needs. And they can affect each of us differently. Have you mentioned this to your doctor? What did you find out?

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@jws10

Hi all,
I am 35 year old female, 4 months post transplant. I am very lucky in that everything is going very well, no complications, little side effects, taken off Prednisone after 3 months and my other meds are in low doses.
Other than hair loss and acne (both of which are improving) my greatest concern is joint pain and stiffness. Bone density is normal. RA negative. Never had this problem before and it's getting worse. After sitting for 15 minutes I feel like a cripple trying to stand up. Getting out of bed in the morning is the worst?
Anyone else have a similar experience?

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@jws10 im not sure mine is the same reason due the fact im 60 but i do have some joint pain and stiffness after sitting to long or sleeping. Mostly in one shoulder and my hand knuckles but it seems better once i get up and moving. But still don't know if its just old age or due to my transplant meds. Im 2 years post heart transplant next month so ill mention to my team. I do remember more pain back during my first 6 months but mainly from the cheat incision. Not so much joint pain. My biggest problem then was just overall weakness from being in bed too much prior to transplant. But talk to your drs for sure.

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@rosemarya

@jws10, I am happy meet you and to welcome you to Connect. Organ transplant is a beautiful event, and I wish you many happy healthy years to come.
I have lived happily for 10 years with my transplanted liver and kidney. I had to take prednisone after my transplant surgery at a high dose, and it was tapered to a lower dose (5 mg) within the first couple months. I do not recall any difficulty with it. However, due to the kidney's needs, I remained on the 5 mg dose for several years, and still no problems. Then I was given the directions to taper off the prednisone and I had to take it slowly. At first a tiny reduction of 5mg to 2.5 mg daily caused me stiff and painful joints, and made me feel yucky for nearly a week. Then my drop from 2.5 mg to 0 mg did the same thing to my body – stiffness, aches and pains. Some stretching and gentle exercises helped, and I was permited to take tylenol. It was my PCP who suggested me to taper to every other day then every third day…And that worked the best for me when I was at 1.25 mg. (Yes! I did cut those tiny pillsinto 1/4)

I would encourage you to contact yout doctor because, all medicines, especially for us transplantees are specific to our individual needs. And they can affect each of us differently. Have you mentioned this to your doctor? What did you find out?

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Hi all it's been awhile since I've been here…. I go to st.cloud mn . monday for ct scan to see if the three spotz are still there or have grown and blood work.. Depending on the weather. Expecting up to a foot of snow.

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@racing212

Hi all it's been awhile since I've been here…. I go to st.cloud mn . monday for ct scan to see if the three spotz are still there or have grown and blood work.. Depending on the weather. Expecting up to a foot of snow.

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@racing212, Thank you for caring enough to share your update on Connect. As a transplant recipient, I am always very much interested to to hear from other transplant patients. Especially those, like you, are in the waiting process, because I remember that my own waiting experience . Rodney, I hope that the weatehr is cooperative so that you will be able to safely travel to St Cloud.
I live in Kentucky and if we got a foot of snow, we would have to shut down! We just don't get that kind of snow and so we don't have the equipment to deal with it.
I want, and I hope for you to get a good report. Is this a one day trip? Or with an overnight? When do you expect to get the results?

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@rosemarya

@racing212, Thank you for caring enough to share your update on Connect. As a transplant recipient, I am always very much interested to to hear from other transplant patients. Especially those, like you, are in the waiting process, because I remember that my own waiting experience . Rodney, I hope that the weatehr is cooperative so that you will be able to safely travel to St Cloud.
I live in Kentucky and if we got a foot of snow, we would have to shut down! We just don't get that kind of snow and so we don't have the equipment to deal with it.
I want, and I hope for you to get a good report. Is this a one day trip? Or with an overnight? When do you expect to get the results?

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It's just a one day event…… Please call me chuck.

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@racing212

It's just a one day event…… Please call me chuck.

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racing212, Hi, Chuck. I will be happy to call you Chuck🙂
One question – If the appointment has to be cancelled due to the weather, do you know if you will be able to reschedule it soon?

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@rosemarya

racing212, Hi, Chuck. I will be happy to call you Chuck🙂
One question – If the appointment has to be cancelled due to the weather, do you know if you will be able to reschedule it soon?

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I wiil try to get it set up for January.

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@racing212

Hi all it's been awhile since I've been here…. I go to st.cloud mn . monday for ct scan to see if the three spotz are still there or have grown and blood work.. Depending on the weather. Expecting up to a foot of snow.

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@racing212, Good Morning and Happy New Year! Did the weather cooperate with your travel for the appointment? Is there any update that you are comfortable to share? What is the next step?

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@rosemarya

@racing212, Good Morning and Happy New Year! Did the weather cooperate with your travel for the appointment? Is there any update that you are comfortable to share? What is the next step?

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The trip was a slow one. Slippery roads. But i made it there and back
I got the results back Tuesday and the blood work was better than last time. And the ct scan showed no evidence of a mass thist time

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@racing212

The trip was a slow one. Slippery roads. But i made it there and back
I got the results back Tuesday and the blood work was better than last time. And the ct scan showed no evidence of a mass thist time

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@racing212, Chuck, This sounds like promising news to me. What kind of follow-up will you need?

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@racing212

The trip was a slow one. Slippery roads. But i made it there and back
I got the results back Tuesday and the blood work was better than last time. And the ct scan showed no evidence of a mass thist time

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@racing212 Chuck, your blood work sounds promising. Where are you currently on the transplant waitlist? I hope you don't have to wait too much longer, it is really a miserable time.
JK

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I want to say thank you to all of the members who are so graciously sharing, asking questions, and supporting other transplant patients and loved ones. I wish I had known you when I was going thru the transplant experience!

I have recently scheduled my appointment for my annual evaluation at Mayo. I can hardly believe that this will be my 11th year since my transplant surgery. In some ways it seems like just yesterday and yet it also feels like a lifetime ago. Every year at this time, I am faced with the memories of my own difficult phase in my own transplant journey that included: being inactivated from the transplant list from mid January 2009 until March 13, 2009; acute kidney failure and dialysis; emergency transport and critical care in regional ICU; medical flight to Mayo Rochester where I found out I needed a kidney transplant in addition to liver transplant; in April 2009 got a simultaneous liver and kidney transplant.
By now, I am familiar with the scheduled tests and protocol procedures, so there is less stress. I chose to share this part of my experience to let you know that anything and everything is possible even when it appears hopeless.

I have spent the greater part of my afternoon viewing the posts in this support group discussion. Wow! I am so amazed at the vast amount of kindness and support that has occurred here. . @frankw54, @jerrydrennan, @calikellyw, @calikellyw, @mego2k, @rodney9999, @christinelouise, @luckonetj, @tr1pol1sue, @danab, @des46893, @jim1208, @flagal22, @livertrex, @wildcat, @benlam11, @tayloryvette, @racing212, @leahd, @skipmarsliver, @tgshomes, @mostlybill, @slslape56, @jws10, @gaylea1, @jeanne5009, @jodeej, @stella25 – Won't you drop in to say, "Hi"?

This is a support group – let's keep it going – What do you want to talk about? How are you getting along? What would you like to ask? What would you like to share?

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@rosemarya

I want to say thank you to all of the members who are so graciously sharing, asking questions, and supporting other transplant patients and loved ones. I wish I had known you when I was going thru the transplant experience!

I have recently scheduled my appointment for my annual evaluation at Mayo. I can hardly believe that this will be my 11th year since my transplant surgery. In some ways it seems like just yesterday and yet it also feels like a lifetime ago. Every year at this time, I am faced with the memories of my own difficult phase in my own transplant journey that included: being inactivated from the transplant list from mid January 2009 until March 13, 2009; acute kidney failure and dialysis; emergency transport and critical care in regional ICU; medical flight to Mayo Rochester where I found out I needed a kidney transplant in addition to liver transplant; in April 2009 got a simultaneous liver and kidney transplant.
By now, I am familiar with the scheduled tests and protocol procedures, so there is less stress. I chose to share this part of my experience to let you know that anything and everything is possible even when it appears hopeless.

I have spent the greater part of my afternoon viewing the posts in this support group discussion. Wow! I am so amazed at the vast amount of kindness and support that has occurred here. . @frankw54, @jerrydrennan, @calikellyw, @calikellyw, @mego2k, @rodney9999, @christinelouise, @luckonetj, @tr1pol1sue, @danab, @des46893, @jim1208, @flagal22, @livertrex, @wildcat, @benlam11, @tayloryvette, @racing212, @leahd, @skipmarsliver, @tgshomes, @mostlybill, @slslape56, @jws10, @gaylea1, @jeanne5009, @jodeej, @stella25 – Won't you drop in to say, "Hi"?

This is a support group – let's keep it going – What do you want to talk about? How are you getting along? What would you like to ask? What would you like to share?

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Congrats on your transplant success !!!! I just celebrated my 10th liver transplant anniversary. Now on the kidney transplant waiting list. I can understand your reflections. It is quite a journey !

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@rosemarya

I want to say thank you to all of the members who are so graciously sharing, asking questions, and supporting other transplant patients and loved ones. I wish I had known you when I was going thru the transplant experience!

I have recently scheduled my appointment for my annual evaluation at Mayo. I can hardly believe that this will be my 11th year since my transplant surgery. In some ways it seems like just yesterday and yet it also feels like a lifetime ago. Every year at this time, I am faced with the memories of my own difficult phase in my own transplant journey that included: being inactivated from the transplant list from mid January 2009 until March 13, 2009; acute kidney failure and dialysis; emergency transport and critical care in regional ICU; medical flight to Mayo Rochester where I found out I needed a kidney transplant in addition to liver transplant; in April 2009 got a simultaneous liver and kidney transplant.
By now, I am familiar with the scheduled tests and protocol procedures, so there is less stress. I chose to share this part of my experience to let you know that anything and everything is possible even when it appears hopeless.

I have spent the greater part of my afternoon viewing the posts in this support group discussion. Wow! I am so amazed at the vast amount of kindness and support that has occurred here. . @frankw54, @jerrydrennan, @calikellyw, @calikellyw, @mego2k, @rodney9999, @christinelouise, @luckonetj, @tr1pol1sue, @danab, @des46893, @jim1208, @flagal22, @livertrex, @wildcat, @benlam11, @tayloryvette, @racing212, @leahd, @skipmarsliver, @tgshomes, @mostlybill, @slslape56, @jws10, @gaylea1, @jeanne5009, @jodeej, @stella25 – Won't you drop in to say, "Hi"?

This is a support group – let's keep it going – What do you want to talk about? How are you getting along? What would you like to ask? What would you like to share?

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Rosemary you are an inspiration to us all. Your support and kindness helped me beyond belief. Pre and post transplant you have been a beacon. I have another ERCP booked for Mar 16 to either remove or replace my bile duct stent. As you know I have had a bad history of ERCPs with the pancreatitis outcomes. In Jan I joined a private gym and contracted a personal trainer and nutritionist. My body is already stronger. Who knew I'd have it in me to regain control of my life and body. You are a true hero to me. Thank you, thank you, thank you. 💚

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