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Mentor

This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

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

lexiopo | @lexiopo | Jul 9, 2017
In reply to @herbswife "My husband has just been diagnosed with liver disease in the last month, I am desperately..." + (show)
@herbswife

My husband has just been diagnosed with liver disease in the last month, I am desperately trying to avoid a transplant through health and unfortunately the medication we have to take due to all of the symptoms and effects. Can someone please help me understand the day to day struggles like uncontrollable nausea. At this point he can't even take all the medications correctly because he hasn't been able to eat for almost a week. Nausea meds seem to maybe help a little but not enough to get the nutrition that is necessary.

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Thank uou for your reply Lynn. As we are still very early on in all of this we only have our gastroenterologist here in Miami to ask questions to. We see him tomorrow and of all the things that are bothering my husband right now, nausea is not om the list! Fatigue, pain, itchiness, depression.... but thank you so much for just replying and i will reach out to the others you noted as well. God bless!

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IWantToBelieve | @IWantToBelieve | Jul 9, 2017
In reply to @contentandwell "@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235..." + (show)
@contentandwell

@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235 at one point!
JK

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@hopeful33250 - Thanks! I struggle with the "slow" part. I want results yesterday!

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IWantToBelieve | @IWantToBelieve | Jul 9, 2017
In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)
@contentandwell

@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications I could and not take if it was a fungus. They told me that but did not mention any possibility of it being weakened nails from the medications. I want to ask them about using lamosil also, so I will call or ask on the portal about those two things.
This is never an issue I would have thought I would be discussing on this forum but I probably brought it up wondering if anyone else had a problem from the typical immunosuppressants. Thanks for the feedback to all. I guess I will ask but then if they are not sure I will continue with the treatment. I have already paid for it up front.
The bigger issue now is despite my drinking massive amounts of water my creatinine continues to go up. On Monday it was up to 1.78. I am sure I will be getting a call from MGH tomorrow. They cannot possibly want me to drink even more water -- I am close to 100 oz a day now! I find the days I go to the pool the easiest to get all of that water in. I do one of my 3.5 cup water bottles while in the water, refill it and do a second and then drink more in the evening to finish off the large requirement -- glug...glug...glug.
JK

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@hopeful33250 - Well analytical is a good description of me ; - )

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IWantToBelieve | @IWantToBelieve | Jul 9, 2017
In reply to @lexiopo "Hi everyone...i am just starting on the journey of becoming a living liver donor for my..." + (show)
@lexiopo

Hi everyone...i am just starting on the journey of becoming a living liver donor for my husband. He is from MN and I am from Florida. We have been living in Florida since early 2015 when my hiusband so graciously agreed to move to Florida to care for my Dad who was at the end stage of his battle with cancer. After Dad passed in March 2015 there was no question we would stay here to look after my Mom who was beginning to show signs of dementia. Two years and 3 months later my husband is battling for his own life and I am hoping i can be his living liver donor. The first place i contacted was the Mayo in good old MN. Of course our insurance has changed and so has a lot of things but family support both in Miami and in MN has increased. Any words of support would be greatly appreciated! Thank you to evrryone who jas gone down this scary process before us. Bless all of you.

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@lexiopo - Welcome! So glad you found this chat. I don't have a lot of practical advice as I am waiting for a living kidney donor but I do know The Mayo Clinic is a wise choice for treatment. How great that both of your homes are also Mayo locations! Have you met with the transplant team yet? If not, when is your appointment? I'm sure you wanted it yesterday. There are at least two people, @rosemarya and @contentandwell who have received liver transplants but I'm not sure if they were from living donors. They are active in this chat so I'm sure they will reach out once they see your post.

Hang in there!

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IWantToBelieve | @IWantToBelieve | Jul 9, 2017
In reply to @contentandwell "@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235..." + (show)
@contentandwell

@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235 at one point!
JK

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@2011panc - Thank you for your advice and I totally agree. I do most of what you said except the 6 meals a day. I should try that as I have done it before. I have almost totally cut out bread (eat maybe twice a week). I realize I also have to be more patient. Thank you for sharing.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 9, 2017
In reply to @contentandwell "@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235..." + (show)
@contentandwell

@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235 at one point!
JK

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@lcamino, Have you seen this Mayo link on CKD (chronic kidney disease)? I offer it because it does mention some of the symptoms that you have described.
http://mayocl.in/2fxBXIR
I experienced some mild fatigue early in my liver disease. I attributed it to the hard days of teaching middle school students. But as time went on, my condition remained fairly stable and my fatigue and tiredness increased disproportionately. My GI said to rest when I needed....I still do that-nap when needed.
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 9, 2017
In reply to @contentandwell "@rosemarya @hopeful33250 @lcamino Thanks to all of you for all of your encouraging words. This really..." + (show)
@contentandwell

@rosemarya @hopeful33250 @lcamino Thanks to all of you for all of your encouraging words. This really is a nice haven to share the good and the bad. Thankfully it seems like most of us are doing pretty well now - Lynn you are like I was, going strong with a transplant in the future. When I have time to read the posts on MAC/MAI I feel so bad for the people suffering from that, it sounds horrible.
I really do feel so fortunate to be where I am at. I went to a wake today for the last aunt from my mother's generation. Of course I saw many relatives and every one thought I looked great, which compared to how I looked before I guess I do. I never realized it at the time that although I never had a yellow cast to my skin I did look pretty pale and colorless. Of course a lot of their comments were brought on too by the fact that I have lost much weight too.
JK

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@lcamino, Celebrations and determination are both essential for your journey !

Wednesday, I'll get my labs drawn. My husband and I have a tradition of celebrating with donuts from our local favorite bakery!!! Fortunately this celebration only happens every 3 months:-)
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 9, 2017
In reply to @lexiopo "Hi everyone...i am just starting on the journey of becoming a living liver donor for my..." + (show)
@lexiopo

Hi everyone...i am just starting on the journey of becoming a living liver donor for my husband. He is from MN and I am from Florida. We have been living in Florida since early 2015 when my hiusband so graciously agreed to move to Florida to care for my Dad who was at the end stage of his battle with cancer. After Dad passed in March 2015 there was no question we would stay here to look after my Mom who was beginning to show signs of dementia. Two years and 3 months later my husband is battling for his own life and I am hoping i can be his living liver donor. The first place i contacted was the Mayo in good old MN. Of course our insurance has changed and so has a lot of things but family support both in Miami and in MN has increased. Any words of support would be greatly appreciated! Thank you to evrryone who jas gone down this scary process before us. Bless all of you.

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@lexiopo, I would like to welcome you to our discussion. I am happy that you have joined us. I am a liver/kidney transplant recipient (2009). I received my organs from an anonymous deceased donor. I have been in your shoes with the personal parental experiences. In fact my own mom had dementia, and her husband/caregiver died when I was going thru my own journey. You have my prayers and my support. I want to add that having the support of your family and friends is extremely important for both you and your husband as you go thru this process.
I look forward to walking with you, if you want me to. I extend my hand for support.
Rosemary

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JK | @contentandwell | Jul 9, 2017
In reply to @herbswife "My husband has just been diagnosed with liver disease in the last month, I am desperately..." + (show)
@herbswife

My husband has just been diagnosed with liver disease in the last month, I am desperately trying to avoid a transplant through health and unfortunately the medication we have to take due to all of the symptoms and effects. Can someone please help me understand the day to day struggles like uncontrollable nausea. At this point he can't even take all the medications correctly because he hasn't been able to eat for almost a week. Nausea meds seem to maybe help a little but not enough to get the nutrition that is necessary.

Jump to this post

@lcamino @herbswife I wish I could help but early on in my journey toward a diagnosis and eventual transplant the only symptoms I had were occasional HE episodes and fatigue. Then after getting on lactulose I did have nausea but that was generally @ an hour after taking it. At one point, during the summer before transplant, I did have more nausea and was given first one then another anti-nausea medication but they totally knocked me out and did not seem to help the nausea much.
When your liver is compromised it effects how medications are digested. My gastroenterologist prescribed numerous PPIs but each one made me sicker than the other. I finally went back to the least of the evils, omeprazole, and my body eventually adjusted to it. There were other medications also that made me sick, just can't remember which now.
I had pain following an ablation procedure and was prescribed pain relievers but they, rather than making me drowsy, kept me awake all night staring at the ceiling!
It is amazing how much your liver does and how many things are effected by it when it's not working well.
JK

REPLY
IWantToBelieve | @IWantToBelieve | Jul 9, 2017
In reply to @contentandwell "@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235..." + (show)
@contentandwell

@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235 at one point!
JK

Jump to this post

@rosemarya - I have seen that information but it has been awhile. I think I will just ask the doctor when I see him next month. I think I'm at the stage where my kidneys are still doing enough (no swelling, no itchiness, no nausea, no vomiting, no anemia, potassium level good etc.) and the study meds are keeping my urine flow sufficient so I'm inclined to think it is not my kidney's failing. For awhile I thought my nausea was from kidney failure but my doctor prescribed a med for acid reflux (might be from enlarged kidneys pushing on other organs) and the problem resolved. I do remember asking my doctor why I don't feel more sick (I watched my Dad feel very sick but he was on dialysis before he got his transplant) and he said he said I should never feel that way if I get a living kidney donation. Essentially, the transplant will happen before all those nasty symptoms of kidney failure start. Apparently the kidney is quite a remarkable organ and can adapt, work fully, for a long time before the symptoms start. For example, I have 25% of my kidney functioning but I don't have any symptoms of kidney failure (except high creatinine and a low GFR that is only distinguishable by labs). I guess that is why people can live with just one kidney. But, I will ask the doctor in August.

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