Liver disease

Posted by herbswife @herbswife, Jul 8, 2017

My husband has been diagnosed with liver disease as of June 1, desperate to find someone that has been in this situation to tell me what is normal and how to conquer the daily challenges like uncontrollable nausea and other situations we are dealing with.

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

Hello @herbswife Nice to e-meet you here and I am sorry to hear of your husband's medical condition. I am Scott and while my wife suffered from a different disease I was her primary caregiver for 14+ years.

Caregiving is the only job I ever had where I was thrust into the job with no training and no employee manual! It is a tough row to hoe and I am glad you reached out to Connect. Here in the Caregivers discussion group there are many folks who are dealing with the often overwhelming demands of caregiving so please know you are not alone!

I know from my experiences as a well-seasoned caregiver (I am not a medical professional at all) caregiving can be isolating, incredibly demanding, and cause for much consternation as to whether we are doing what is right all the time.

My wife suffered from constant nausea during her illness. I did a couple of basic things for her. I quit cooking anything which was aromatic for her meals. She finally found some relief with small meals every so often and was down to a plain, baked chicken breast, mixed veggies, and white rice. Oddly she found black coffee good and non-nausea causing. I quit using my aftershave as this also was a source of discomfort for her and switched to an odor-free laundry detergent, especially for bedding, towels, and sleepwear. Her neuro-oncologist explained to me often with disease someone's sensory reactions become highly turned and changeable.

I know each person's illness is unique, but I share the above in the knowledge it helped my wife a bit.

What other caregiving issues are you seeking support with?

Peace & Strength

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I found that not smelling good cooking helped (especially coffee for some reason). I also did not wear turtlenecks or anything binding like belts bc they stimulated more nausea. Putting a drop of peppermint oil under my nose helped for some reason. It's hard and it changes but I have totally recovered from an autoimmune liver disease. Keep trying. Something ought to work to relieve or prevent the nausea. Keep trying.

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@sallysue

I found that not smelling good cooking helped (especially coffee for some reason). I also did not wear turtlenecks or anything binding like belts bc they stimulated more nausea. Putting a drop of peppermint oil under my nose helped for some reason. It's hard and it changes but I have totally recovered from an autoimmune liver disease. Keep trying. Something ought to work to relieve or prevent the nausea. Keep trying.

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Sometimes I was able to sip flat, room temperature ginger ale.

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@herbswife, I am a liver/kidney transplant recipient. I lived with a chronic liver disease for nearly 8 years before I needed a transplant because there is no no treatment for my particular disease. During those 8 years I experienced a wide variety of symptoms. There is a wide range of liver disease, and each might have a different treatment and outcome potential. One thing that my doctors told me was that there are some symptoms that are common to all liver disease.
Here is the link to Mayo Clinic's Information about liver disease. I believe that you will find some helpful information. http://mayocl.in/2uOIGTq

At first my nausea was mild, but eventually became overwhelming. And like your husband, I could not keep my meds down. Sometimes medication changes helped. - just a little bit. I had ate small amounts of mostly bland food. My food tastes changed often - sometimes daily. Plain jello. toast, broth, tea, flat ginger ale, were my most common diet choices. I hope that this gives you some ideas.

herbswife, In order to better help you, I need to ask you a couple of questions How long has your husband felt like this? and What have his doctors told you about it?
Rosemary

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Hello @herbswife! Welcome to Mayo Clinic Connect.

I see that you have connected with a few of our members and they have shared some good advice. I wanted to add my welcome to our community. Mayo Clinic Connect is a place for you to share medical experiences and connect with others who may be traveling down the same or similar road as you and your husband. Please know that we are not medical providers or medical specialist. We do however like to share our stories and help where we can. I'm happy to see that you have found your way to this special group! It looks like Colleen has also introduced you to a few members in the Transplant group too.

The only thing I would like to add is- I have seen people at Mayo Clinic with nausea use a product called QueaseEASE found here http://bit.ly/2uiZ7tT. Maybe this would be helpful for Herbs nausea?

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@jamienolson

Hello @herbswife! Welcome to Mayo Clinic Connect.

I see that you have connected with a few of our members and they have shared some good advice. I wanted to add my welcome to our community. Mayo Clinic Connect is a place for you to share medical experiences and connect with others who may be traveling down the same or similar road as you and your husband. Please know that we are not medical providers or medical specialist. We do however like to share our stories and help where we can. I'm happy to see that you have found your way to this special group! It looks like Colleen has also introduced you to a few members in the Transplant group too.

The only thing I would like to add is- I have seen people at Mayo Clinic with nausea use a product called QueaseEASE found here http://bit.ly/2uiZ7tT. Maybe this would be helpful for Herbs nausea?

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@jamienolson, I just looked at the link to QueaseEASE and I noticed that it contains essential oils. As a liver transplant recipient, I have been advised to stay away from use of essential oils as well as some other 'natural' products until conclusive research has proven their safety to my liver and medicine combination.

There are many products that are safe for the general healthy population, but are not safe for those with a disease/compromised liver. I urge @herbswife, as well as anyone with liver disease or transplant to check with their doctor first.

When you are living with liver disease - the rules change.
Rosemary

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Thank you for the information @rosemarya! That is important information to know!!

The product I mentioned is something you smell to help the nausea. It was actually a transplant patient of ours that was using this "smell stick" at Mayo when I stopped him and questioned what the product was. 🙂 (I'm so nosey sometimes ha!)

Never the less- this is why it's so important for us, as Connect members, to state we are not medical providers and we are not giving medical advice here. Also, pointing out what you mentioned above "to always check with your doctor first"- excellent advice. Thank you for adding that!

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@herbswife, You have been on my mind lately. So I am sending you and your husband a "Thinking of You" note. I want you to know that you do not need to be alone. From my own experience, I learned that living with liver disease can be a frightening and lonely time. I/we are here to walk with you.
Rosemary

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Hi, I hope things are becoming clearer for you. Although my husbands illness is lymphoma not liver disease, I quickly had to learn how to be an advocate for my husband. Writing down questions, seeking meds for nausea, constipation, dyhydration, mal nutrition due to illness and chemo and meds all became part of my world. I was careful what I read from Google and only read from reputable Medical Journels, not personal stuff which was hyped up and very scary to read, full of dangerous medical opinion and direction. So asking questions, talking to nurses, making calls to reputable organisations was very important to me. It's scarey not feeling in control and trusting your team and having faith in a Higher Power, a God of your own understanding is really helpful.
My husband almost died twice. We have been forced to try the one day at a time principle, and it works! Take good care of yourself. Rest and get fresh air somehow each day, that worked wonders for us both. Patient and carer. M.Nina

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@mnina

Hi, I hope things are becoming clearer for you. Although my husbands illness is lymphoma not liver disease, I quickly had to learn how to be an advocate for my husband. Writing down questions, seeking meds for nausea, constipation, dyhydration, mal nutrition due to illness and chemo and meds all became part of my world. I was careful what I read from Google and only read from reputable Medical Journels, not personal stuff which was hyped up and very scary to read, full of dangerous medical opinion and direction. So asking questions, talking to nurses, making calls to reputable organisations was very important to me. It's scarey not feeling in control and trusting your team and having faith in a Higher Power, a God of your own understanding is really helpful.
My husband almost died twice. We have been forced to try the one day at a time principle, and it works! Take good care of yourself. Rest and get fresh air somehow each day, that worked wonders for us both. Patient and carer. M.Nina

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@mnina, Thank you for reply about liver disease.. We all learn when members like you take the time out of your busy day to share with others.

Your solid advocacy advice can easily translate into any disease or condition that one is faced with.

I was once very ill with liver failure, before transplant. I am familiar with one day at a time living. I am blessed to have a husband who, like you, advocated for my well being. Together, we looked for a blessing each day. It was often difficult, but, we were never disappointed.

M.Nina, I wish for you and your husband to enjoy a blessing each day - one day at a time.
Rosemary

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