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Dying of liver failure and leptomeningeal disease

Forums General Melanoma Community Dying of liver failure and leptomeningeal disease

  • Post
    jenniperry
    Participant

    It's so strange to sit and watch the progression of this disease.  He has continued to decline and is now on oxygen.  He has fluid in his left lung and is starting to have secretions.  Thought we had the nausea and vomiting under control until this morning when it started back only 1 hour after phenergan.  He is on so many medicines for all his symptoms.  He has been up and down the last week.  I never thought he would make it to this week by how he looked last week, but he continues to surprise me.  He was able to get up and spend time with me on my b

    It's so strange to sit and watch the progression of this disease.  He has continued to decline and is now on oxygen.  He has fluid in his left lung and is starting to have secretions.  Thought we had the nausea and vomiting under control until this morning when it started back only 1 hour after phenergan.  He is on so many medicines for all his symptoms.  He has been up and down the last week.  I never thought he would make it to this week by how he looked last week, but he continues to surprise me.  He was able to get up and spend time with me on my birthday and was up and doing some things on his "list" yesterday.  His eyes are looking glassy and his face is thin. His kidneys are hurting him and his urine is very dark and not much being produced. It's like an emotional roller coaster.  He's up then way down.  I just feel like I don't know how much more I can take.  I'm trying so hard to just cherish every minute he's awake, but find myself constantly looking for clues of how much time he has.  I just don't want to see him suffer and waste away.  Praying for mercy.

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  • Replies
      Fen
      Participant

      Oh Jenni, I'm so sorry. This awful disease takes so many beautiful lives.  Are you getting help? Any family around – and are they supportive?  Is hospice coming?  Keeping you both in my prayers.

      Fen 

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      Fen
      Participant

      Oh Jenni, I'm so sorry. This awful disease takes so many beautiful lives.  Are you getting help? Any family around – and are they supportive?  Is hospice coming?  Keeping you both in my prayers.

      Fen 

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        jenniperry
        Participant

        Hospice is here three days a week and tons of support from friends.  My mom was supposed to come, however at the last minute decided to head south to stay with my sister because she was having threats of miscarriage.  I was very upset, as she didn't even call to tell me she wasn't coming, I heard that from my sister.  I haven't spoken to her since asking her to come.  I've been doing this mostly alone.  His brother came for almost 5 days and that was a huge help and his mom came at the beginning for 11 days.  Now it's mostly friends showing up to chat.  He really won't let anyone help him except me, but is still ambulatory, which is amazing in itself.  Most things I've read on leptomeningeal disease untreated is at most 4-8 weeks and we are going on week 9.  I'm just tired and scared.  Thank you for the encouragement.

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        jenniperry
        Participant

        Hospice is here three days a week and tons of support from friends.  My mom was supposed to come, however at the last minute decided to head south to stay with my sister because she was having threats of miscarriage.  I was very upset, as she didn't even call to tell me she wasn't coming, I heard that from my sister.  I haven't spoken to her since asking her to come.  I've been doing this mostly alone.  His brother came for almost 5 days and that was a huge help and his mom came at the beginning for 11 days.  Now it's mostly friends showing up to chat.  He really won't let anyone help him except me, but is still ambulatory, which is amazing in itself.  Most things I've read on leptomeningeal disease untreated is at most 4-8 weeks and we are going on week 9.  I'm just tired and scared.  Thank you for the encouragement.

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        Laurie from maine
        Participant

        Oh I am so sorry, this awful awful disease.    I am glad you have friends around and hospice, but so sorry that your mom cant be there to help you right now.  He sounds so amazing that he is having moments to pull it together and be alert – like your birthday.  I am praying for him and you.  I hope hospice can come in more to help ease some of the care giving for you.

        take care, sending strong prayers your way.

        laurie  

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        Laurie from maine
        Participant

        Oh I am so sorry, this awful awful disease.    I am glad you have friends around and hospice, but so sorry that your mom cant be there to help you right now.  He sounds so amazing that he is having moments to pull it together and be alert – like your birthday.  I am praying for him and you.  I hope hospice can come in more to help ease some of the care giving for you.

        take care, sending strong prayers your way.

        laurie  

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      jag
      Participant

      Jenni, I will pray that you have strength getting through this difficult time and that your husband finds peace.

      Regards

      John

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      jag
      Participant

      Jenni, I will pray that you have strength getting through this difficult time and that your husband finds peace.

      Regards

      John

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      Lori C
      Participant

      Jenni, this is exactly what Will went through.  I will pray and keep you in my thoughts but if you want to talk, please email me at Brennan07 at aol.com – anytime. 

       

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      Lori C
      Participant

      Jenni, this is exactly what Will went through.  I will pray and keep you in my thoughts but if you want to talk, please email me at Brennan07 at aol.com – anytime. 

       

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        Vermont_Donna
        Participant

        Dear Jenni,

         I am so sorry for both of you! This is a horrible disease, causing such terrible physical and mental torture. I HATE it! I hate it for you and your husband and family and I hate it for me and my family and for all of us!

        Thank you for taking the time to update us and know that prayers for mercy are winging your way.

        Vermont_Donna, stage 3a

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        Vermont_Donna
        Participant

        Dear Jenni,

         I am so sorry for both of you! This is a horrible disease, causing such terrible physical and mental torture. I HATE it! I hate it for you and your husband and family and I hate it for me and my family and for all of us!

        Thank you for taking the time to update us and know that prayers for mercy are winging your way.

        Vermont_Donna, stage 3a

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      Sherron
      Participant

      Jenni,

      I am so sorry you are going throught this journey.  It is an awful journey.  I lost Jim on Nov 30, 2010..I remember his pain, the vomiting, being sick of being in the bed…the bed sores…I am glad he is able to be home.  That is one thing, Jim could not come home.  He needed 24/7 care and the VA could not supply that and we did not have enough of local extended family, and even if we did, we could not of done all the things that Jim needed.  All I  can say, is cherish each day you have, make a few more memories…I pray for you and the pain you are in, because I truly know your pain…And I pray for Brian's pain to be relieved…It hurts to watch them be so very sick, and there is nothing you can do…My heart goes out to the both of you.  Sending you a cyber hug Jenni.  I think you need one.

      Take Care,

      Sherron, wife to Jim FOREVER

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      Sherron
      Participant

      Jenni,

      I am so sorry you are going throught this journey.  It is an awful journey.  I lost Jim on Nov 30, 2010..I remember his pain, the vomiting, being sick of being in the bed…the bed sores…I am glad he is able to be home.  That is one thing, Jim could not come home.  He needed 24/7 care and the VA could not supply that and we did not have enough of local extended family, and even if we did, we could not of done all the things that Jim needed.  All I  can say, is cherish each day you have, make a few more memories…I pray for you and the pain you are in, because I truly know your pain…And I pray for Brian's pain to be relieved…It hurts to watch them be so very sick, and there is nothing you can do…My heart goes out to the both of you.  Sending you a cyber hug Jenni.  I think you need one.

      Take Care,

      Sherron, wife to Jim FOREVER

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      MaryD
      Participant

      Jenni,

      I'm so sorry you both have to go through this – it is so hearbreaking to watch.   Very happy you have hospice for some support which is so important during this time.   Sending prayers that you can cherish every moment together and that he can be kept as comfortable as possible.

       

      Mary

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      MaryD
      Participant

      Jenni,

      I'm so sorry you both have to go through this – it is so hearbreaking to watch.   Very happy you have hospice for some support which is so important during this time.   Sending prayers that you can cherish every moment together and that he can be kept as comfortable as possible.

       

      Mary

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      JuleFL
      Participant
      Jenni, I understand what you are going through as I lost my husband 5 months ago. Just concentrate on your love for him and let hospice do what they can. I know exactly what you mean about looking for clues, I think that this is normal. It is terrible to watch a loved one suffer. I wish you two peace and will be praying for you.

      Jule

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        Sherron
        Participant

        Hi Jule,

        How are you doing?  I have been thinking of you.  I can't find your e-mail right now.  Perhaps, it is still in my home computer.  It's so hard, isn't it.? 

        Take Care,

        Sherron, wife to Jim FOREVER

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        Terra
        Participant

        Hi Jenny, I wish I could say something, but I don't know what.  You will be able to continue as long as you have to and remember he knows your there.

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        Terra
        Participant

        Hi Jenny, I wish I could say something, but I don't know what.  You will be able to continue as long as you have to and remember he knows your there.

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        Sherron
        Participant

        Hi Jule,

        How are you doing?  I have been thinking of you.  I can't find your e-mail right now.  Perhaps, it is still in my home computer.  It's so hard, isn't it.? 

        Take Care,

        Sherron, wife to Jim FOREVER

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      JuleFL
      Participant
      Jenni, I understand what you are going through as I lost my husband 5 months ago. Just concentrate on your love for him and let hospice do what they can. I know exactly what you mean about looking for clues, I think that this is normal. It is terrible to watch a loved one suffer. I wish you two peace and will be praying for you.

      Jule

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