Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

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

@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?

Jump to this post

I wiil try to get it set up for January.

REPLY
@racing212

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

Jump to this post

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?

REPLY
@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?

Jump to this post

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

REPLY
@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.

Jump to this post

@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?

REPLY
@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?

Jump to this post

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.

REPLY
@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?

Jump to this post

@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.

REPLY
@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?

Jump to this post

@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?

REPLY
@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.

Jump to this post

@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.

REPLY

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?

REPLY
@gaylea1

@parmcat Hello! Hi am in London Ontario waiting for a transplant. I have never see anyone on this site before from our area. I joined connect at Mayo about a year ago as I had no support group here in London. This site has been helping me along my journey. They have been invaluable in support and advice. I was put on the wait list July 10th 2016. My MELD score is 30+ and am still waiting for a match. I would love to hear about your experiences with the transplant clinic at UH. I would love to hear frm you.

Jump to this post

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.

REPLY
Please sign in or register to post a reply.