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How Do I Cope When I Feel Awful?

Posted by @rosemarya, Jul 8, 2017

Before my transplant I felt awful. It felt as if the air around me had turned into a heavy sticky molasses. Every movement was difficult. Thinking was slow and labored. Eating was a constant challenge. Even time moved slowly as I awaited a liver transplant.

Does any of this sound familiar to you? How did you cope? What practical suggestions will you share with others who are experiencing this now?

What questions do you have?

REPLY

It is ironic that I saw my GI from my early liver disease days today. Maybe that prompted this discussion!
I remember that he told me that I had to make myself eat, even though I didn’t feel like it. Nothing appealed to me, and nausea was a big issue.
He suggested Ensure – and when I growled at him – he winked at me and said, “A scoop of ice cream makes it taste better.”
I hope that this helps someone to get a little nutrition, or at least a smile.
Blessings to you. Rosemary

@rosemarya

It is ironic that I saw my GI from my early liver disease days today. Maybe that prompted this discussion!
I remember that he told me that I had to make myself eat, even though I didn’t feel like it. Nothing appealed to me, and nausea was a big issue.
He suggested Ensure – and when I growled at him – he winked at me and said, “A scoop of ice cream makes it taste better.”
I hope that this helps someone to get a little nutrition, or at least a smile.
Blessings to you. Rosemary

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Thanks. I just realayed your info to my wife

@rosemarya – I just started following this chat. Of course I don’t feel terrible yet, and hopefully won’t if I get a living kidney donation before I need dialysis but I’m anticipating that I might be able to relate at some point. I mentioned in another chat that fatigue is my main symptom at this time. It is a good day if I don’t need an afternoon nap. If I’m not careful that 30 minute nap can turn into 2 hours. I don’t know if it is my kidney health (still not on dialysis), getting up a lot in the middle of the night, or being out of shape. I hope others join us in this conversation.

Lynn

Hi @lexiopo and @herbswife, I would like to add my welcome to you both. I’m glad that you found us here on Mayo Clinic Connect at this time when you are both supporting your husbands pre-liver transplant. I’m glad you’ve already met Rosemary, David and Lynn. I’d like to also ask @skittles25 @chattykathy @dglass4040 and @v1crew to join this discussion.

@herbswife – You wrote that you are concerned about the side effects, especially nausea, from all the medications that your husband has to take. You said that it has gotten so bad that “he can’t even take all the medications correctly.” How frightening this must be for both of you, especially you as the caregiver. It is hard to see someone not being able to eat as we equate food with nurturing and giving us strength to fight. I’m also concerned that he can’t take the medication as prescribed. Have you been able to speak to his doctor about this? Have you consulted a dietitian who specializes in kidney disease?

@lexiopo – You do have a row to hoe having moved to care for your father in the end stages of cancer, your mother dealing with dementia and now your husband with liver disease awaiting transplant. Strength to you! I see that nausea is not one of the main side effects that your husband is dealing with but rather itchiness, pain, fatigue and depression. I’m glad that you will be talking with your doctor about all of this tomorrow. Please let us know what you learn. I’m not sure what type of liver disease your husband has but you may garner some insight from this discussion and this article

– Bilateral cirrhosis of liver http://mayocl.in/2u1eS82
– Connecting the Dots Between Depression, Anxiety and Liver Disease http://mayocl.in/2sUI29j

We look forward to learning more about both of you and journeying along with you and your husbands.

@IWantToBelieve

@rosemarya – I just started following this chat. Of course I don’t feel terrible yet, and hopefully won’t if I get a living kidney donation before I need dialysis but I’m anticipating that I might be able to relate at some point. I mentioned in another chat that fatigue is my main symptom at this time. It is a good day if I don’t need an afternoon nap. If I’m not careful that 30 minute nap can turn into 2 hours. I don’t know if it is my kidney health (still not on dialysis), getting up a lot in the middle of the night, or being out of shape. I hope others join us in this conversation.

Lynn

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@lcamino Lynn, I had the same problems and I too never knew if it was all my exercising or my condition. I still have some days when I need to nap but oddly I am less apt to on days when I go to my club and do my water exercises.
I have seen my “power naps” also become an hour and a half to two hours. I hate that but it rarely causes me to not sleep, which I have trouble anyway most nights.
JK

Liked by IWantToBelieve

@IWantToBelieve

@rosemarya – I just started following this chat. Of course I don’t feel terrible yet, and hopefully won’t if I get a living kidney donation before I need dialysis but I’m anticipating that I might be able to relate at some point. I mentioned in another chat that fatigue is my main symptom at this time. It is a good day if I don’t need an afternoon nap. If I’m not careful that 30 minute nap can turn into 2 hours. I don’t know if it is my kidney health (still not on dialysis), getting up a lot in the middle of the night, or being out of shape. I hope others join us in this conversation.

Lynn

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@contentandwell – I agree that I nap less often if I exercise that day which is why I tend not to think the fatigue is from my kidney function. Since I believe we are both up a lot at night I believe has the biggest impact on our need to nap during the day. If I don’t nap I’m definitely ready for an earlier bedtime.

Lynn

@IWantToBelieve

@rosemarya – I just started following this chat. Of course I don’t feel terrible yet, and hopefully won’t if I get a living kidney donation before I need dialysis but I’m anticipating that I might be able to relate at some point. I mentioned in another chat that fatigue is my main symptom at this time. It is a good day if I don’t need an afternoon nap. If I’m not careful that 30 minute nap can turn into 2 hours. I don’t know if it is my kidney health (still not on dialysis), getting up a lot in the middle of the night, or being out of shape. I hope others join us in this conversation.

Lynn

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@lcamino I used to be up until all hours of the night, a clone of my mother, but now I do make an effort to get to bed earlier, particularly if I have an early morning the next day. I was the youngest of four children and I often stayed up late (11:00) with my mother and everyone else was in bed. Those are good memories.
JK

Liked by IWantToBelieve

@colleenyoung

Hi @lexiopo and @herbswife, I would like to add my welcome to you both. I’m glad that you found us here on Mayo Clinic Connect at this time when you are both supporting your husbands pre-liver transplant. I’m glad you’ve already met Rosemary, David and Lynn. I’d like to also ask @skittles25 @chattykathy @dglass4040 and @v1crew to join this discussion.

@herbswife – You wrote that you are concerned about the side effects, especially nausea, from all the medications that your husband has to take. You said that it has gotten so bad that “he can’t even take all the medications correctly.” How frightening this must be for both of you, especially you as the caregiver. It is hard to see someone not being able to eat as we equate food with nurturing and giving us strength to fight. I’m also concerned that he can’t take the medication as prescribed. Have you been able to speak to his doctor about this? Have you consulted a dietitian who specializes in kidney disease?

@lexiopo – You do have a row to hoe having moved to care for your father in the end stages of cancer, your mother dealing with dementia and now your husband with liver disease awaiting transplant. Strength to you! I see that nausea is not one of the main side effects that your husband is dealing with but rather itchiness, pain, fatigue and depression. I’m glad that you will be talking with your doctor about all of this tomorrow. Please let us know what you learn. I’m not sure what type of liver disease your husband has but you may garner some insight from this discussion and this article

– Bilateral cirrhosis of liver http://mayocl.in/2u1eS82
– Connecting the Dots Between Depression, Anxiety and Liver Disease http://mayocl.in/2sUI29j

We look forward to learning more about both of you and journeying along with you and your husbands.

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Thank you Colleen!  I will definitely reach out to the others you mentioned that are awaiting a liver transplant!  God Bless.

@colleenyoung

Hi @lexiopo and @herbswife, I would like to add my welcome to you both. I’m glad that you found us here on Mayo Clinic Connect at this time when you are both supporting your husbands pre-liver transplant. I’m glad you’ve already met Rosemary, David and Lynn. I’d like to also ask @skittles25 @chattykathy @dglass4040 and @v1crew to join this discussion.

@herbswife – You wrote that you are concerned about the side effects, especially nausea, from all the medications that your husband has to take. You said that it has gotten so bad that “he can’t even take all the medications correctly.” How frightening this must be for both of you, especially you as the caregiver. It is hard to see someone not being able to eat as we equate food with nurturing and giving us strength to fight. I’m also concerned that he can’t take the medication as prescribed. Have you been able to speak to his doctor about this? Have you consulted a dietitian who specializes in kidney disease?

@lexiopo – You do have a row to hoe having moved to care for your father in the end stages of cancer, your mother dealing with dementia and now your husband with liver disease awaiting transplant. Strength to you! I see that nausea is not one of the main side effects that your husband is dealing with but rather itchiness, pain, fatigue and depression. I’m glad that you will be talking with your doctor about all of this tomorrow. Please let us know what you learn. I’m not sure what type of liver disease your husband has but you may garner some insight from this discussion and this article

– Bilateral cirrhosis of liver http://mayocl.in/2u1eS82
– Connecting the Dots Between Depression, Anxiety and Liver Disease http://mayocl.in/2sUI29j

We look forward to learning more about both of you and journeying along with you and your husbands.

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@lexiopo, I hope that your husband had a good visit with doctor this week.
Rosemary

I waited in Jacksonville, 825 miles from home. I was legally separated from my wife so I was alone. Fortunately, a home church brother had lived in Jax and gave me some numbers of people he knew in the church there. These people who did not know me helped feed me and house me in homes and a hotel. I drove to Orange Park three times a week to attend church. They helped buy my gas so I could. I was extremely uncomfortable. Pruritus was driving me crazy. I was raw from scratching. I had to unbutton my pants and hold them together with a belt due to ascites. I had a huge hernia in my groin from ascites and sitting was difficult. But I still got dressed and drove to church three times a week. They prayed publicly and privately for me and encouraged me greatly. The call for the transplant came while I sat in church. They visited me in the hospital. I owe my life to them as surely as I do the surgeons. My secret to surviving the waiting was to find people who cared and would help.

@mikejones

I waited in Jacksonville, 825 miles from home. I was legally separated from my wife so I was alone. Fortunately, a home church brother had lived in Jax and gave me some numbers of people he knew in the church there. These people who did not know me helped feed me and house me in homes and a hotel. I drove to Orange Park three times a week to attend church. They helped buy my gas so I could. I was extremely uncomfortable. Pruritus was driving me crazy. I was raw from scratching. I had to unbutton my pants and hold them together with a belt due to ascites. I had a huge hernia in my groin from ascites and sitting was difficult. But I still got dressed and drove to church three times a week. They prayed publicly and privately for me and encouraged me greatly. The call for the transplant came while I sat in church. They visited me in the hospital. I owe my life to them as surely as I do the surgeons. My secret to surviving the waiting was to find people who cared and would help.

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Welcome to Connect, @mikejones.
I see from your profile that you had primary sclerosing cholangitis (PSC) and that you are a liver transplant recipient. Glad to have you join the discussions here in the Transplant group (https://connect.mayoclinic.org/group/transplants/). We look forward to getting to know you and your transplant story. How are you doing today?

@mikejones

I waited in Jacksonville, 825 miles from home. I was legally separated from my wife so I was alone. Fortunately, a home church brother had lived in Jax and gave me some numbers of people he knew in the church there. These people who did not know me helped feed me and house me in homes and a hotel. I drove to Orange Park three times a week to attend church. They helped buy my gas so I could. I was extremely uncomfortable. Pruritus was driving me crazy. I was raw from scratching. I had to unbutton my pants and hold them together with a belt due to ascites. I had a huge hernia in my groin from ascites and sitting was difficult. But I still got dressed and drove to church three times a week. They prayed publicly and privately for me and encouraged me greatly. The call for the transplant came while I sat in church. They visited me in the hospital. I owe my life to them as surely as I do the surgeons. My secret to surviving the waiting was to find people who cared and would help.

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@mikejones, Welcome and thank you for sharing.
I am happy to have you join this discussion. And I am especially happy to meet you, a fellow transplant recipient. I also had PSC and I easily recognize those awful symptoms that you have named.
I invite you to look at the Transplant discussion groups that Colleen provided, and to join in at anytime.
Rosemary

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