Stem cell transplant

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  • ShadyGuy
    ShadyGuy Member Posts: 902 Member
    edited June 2017 #22
    Tough Love

    Focus on yourself and getting better. Your daughter, unless she is seriously handicapped, should be helping you and not vice versa. Your daughter has a father and probably a stepmother. Your granddaughter has a father and I assume paternal grandparents. Lots of help. Let them help carry the burden. I worked two fulltime jobs for years. She can do the same. Ultimately we are all responsible for ourselves. That includes you. Focus on yourself and getting better so you will be there for your great-grandaughter! I think you will be. Hard times ahead but hey, you are obviously strong and resilient. CatWink counts too! Put her first for now! Help others later.

    as they say on airlines before taking off " if the oxygen masks deploy, secure your own mask before assisting others"

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #23
    Bee1968 said:

    First time mine was scheduled

    First time mine was scheduled I was anxious. I think it was because it took my body so long to bounce back after ICE. My counts were very low and I required transfusions and nplate injections. I was so fatigued I couldn't imagine going in and having my counts dropped to nothing and fighting my way back. Then my lung function wasn't high enough to go through transplant.  Second time I was scheduled I had went through more ICE since I couldn't tolerate Brentuximab and Opdivo stopped working.  Counts were low again, more transfusions and fluids.  I was more mentally prepared and less anxious this time.  I passed my lung function, got my bloodwork done and was getting some fluids with potassium. I was ready then my blood work came back and my creatinine was 4. My Mugga (heart test) was canceled. Now I'm waiting for my creatinine to drop and living in limbo. It has dropped to 3, but won't budge.  The nephrologist is talking biopsy, but my platelets are 50.  I'm going to insist on nplate before biopsy.  I know God is with me through every step of this. If it is my time to be called home I know where I'm going. Believe me I still have breakdowns, but they are short lived. I'll pray for your anxiety and fear. You can do this!

    Super

    I loved your posts Bee....thank you.

    max

  • catwink22
    catwink22 Member Posts: 281
    #24
    Bee1968 said:

    First time mine was scheduled

    First time mine was scheduled I was anxious. I think it was because it took my body so long to bounce back after ICE. My counts were very low and I required transfusions and nplate injections. I was so fatigued I couldn't imagine going in and having my counts dropped to nothing and fighting my way back. Then my lung function wasn't high enough to go through transplant.  Second time I was scheduled I had went through more ICE since I couldn't tolerate Brentuximab and Opdivo stopped working.  Counts were low again, more transfusions and fluids.  I was more mentally prepared and less anxious this time.  I passed my lung function, got my bloodwork done and was getting some fluids with potassium. I was ready then my blood work came back and my creatinine was 4. My Mugga (heart test) was canceled. Now I'm waiting for my creatinine to drop and living in limbo. It has dropped to 3, but won't budge.  The nephrologist is talking biopsy, but my platelets are 50.  I'm going to insist on nplate before biopsy.  I know God is with me through every step of this. If it is my time to be called home I know where I'm going. Believe me I still have breakdowns, but they are short lived. I'll pray for your anxiety and fear. You can do this!

    Wish u the best

    Thanks Bee. I hope you are getting closer to your transplant. The anxiety has lessened for me, the power of prayer! I will pray for you also!

    Cat

  • catwink22
    catwink22 Member Posts: 281
    #25
    Thanks Shady

    Unfortunately my daughter does not have all the support you mentioned. There is no stepmother (All the women he dated were smarter than me lol!). Her husband is disabled with a back injury after a car accident and her in-laws have passed. I know she will make it, because I taught her to be strong, but no one wants to think of their children suffering and struggling. 

    The anxiety has lessened, I don't know why? Maybe I was extremely tired at the time or just realized it's out of my hands and worrying isn't going to do anything except take the joy from my days.

    Cheers to better days!

    Cat

  • po18guy
    po18guy Member Posts: 1,465 Member
    #26
    Think on the plus side

    A stem cell transplant is an opportunity to live. Hard to find a major downside there. Does it involve a potential major change in your life? Yes, but those changes can actually be for the better. You will experience things that will broaden you horizons. Caring people whom you had no idea even existed. You have a mom's worry, but your daughter will not be left in the care of wolves! Anticipate being pleasantly surprised at who steps up to the plate when needed. I remember always that I have to be alive to have complaints.  

  • Sal0101
    Sal0101 Member Posts: 136 Member
    #27
    Complaining!

    I love complaining! It means I'm alive and aware! A stem cell transplant is eye opening, but if I am ever in that situation again I would do it in a heart beat.  Three weeks or three months is nothing compared to life! 

     

     

     

  • po18guy
    po18guy Member Posts: 1,465 Member
    #28
    Sal0101 said:

    Complaining!

    I love complaining! It means I'm alive and aware! A stem cell transplant is eye opening, but if I am ever in that situation again I would do it in a heart beat.  Three weeks or three months is nothing compared to life! 

     

     

     

    There ya' go, Sal! Decision

    There ya' go, Sal! Decision time for me was easy: Doctor: "We are out of lymphoma drugs. When it relapses again, we may not be able to stop it."

    Easy.

  • ShadyGuy
    ShadyGuy Member Posts: 902 Member
    edited June 2017 #29
    catwink22 said:

    Thanks Shady

    Unfortunately my daughter does not have all the support you mentioned. There is no stepmother (All the women he dated were smarter than me lol!). Her husband is disabled with a back injury after a car accident and her in-laws have passed. I know she will make it, because I taught her to be strong, but no one wants to think of their children suffering and struggling. 

    The anxiety has lessened, I don't know why? Maybe I was extremely tired at the time or just realized it's out of my hands and worrying isn't going to do anything except take the joy from my days.

    Cheers to better days!

    Cat

    Oh My!

    I guess I stuck my foot in my mouth. Its just that I know so many millenials living with their parents. You have a very lovely grand daughter. It will all work out. Still it is wise to focus on getting yourself better. Best of luck!

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