The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 600. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
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    Emily i am sorry to hear of your loss.  My thoughts and prayers are with you and your family.  We are all here for you my dear.  Keep strong.

    love Pauline

  • 601. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
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    Emily, i'm so sorry to hear of the loss of your Grandpa. I will keep You, your Grandma, your Mom and all your family in prayers. God will give you all the strength you need at the moment. once again... I'm sorry.   Sarah


    Denise,... thank you for letting us know.

  • 602. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
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    Colleen, i'm sorry to hear that you're going through so much stuff lately. I hope all went well with the nerve block you had done. I will keep you in my prayers.

    It worries me that you've cut off so many different meds all at once?  I'm kind of doing a bit of experimenting on myself as well. I've cut off my hydrochlorazide (water pill) for blood pressure (been on it for 20 some yrs) and i've been getting horrible muscle spasms in lots of different places, so i think maybe that's the cause of it? so i'm trying that, but trying to monitor my bp at the same time.

    Please make sure that you get your cbc counts regularly. ok?  and i know what you mean about kids and needing energy for them. They are like the energizer batteries! never run out!! lol... i'm old,.. my kids are grown, but i do have a 3 1/2yr. granddaughter, and a 9 yr.old grandson, also a teenage 19yr. old granddaughter.   So keeping up with the 2 young ones at times, can be quite the challenge! i have to push myselfself sometimes and put on a smile, when i really feel like just going and taking a nap instead! lol...

    Do what you can.... don't overdo it, things will still be there the next day   God Bless you Colleen, i'll keep you in prayers...


    Pauli, i'm so glad to hear that things are better for Cindy,... yes, God is good!   but i'm sorry to hear that your son Darrin is having those problems, i will be praying for them.  And you my dear..... have me very worried!!!  Those platelets are Sooo high!  I haven't read all of the posts, but i know you've been going higher and higher. Pauli, please get to the doctor and see what needs to be done.  I've been on hydrea since 11/08 and it's gone well for me for the most part. But i know the decision of starting hydrea or other has to come from oneself. And i do know it's a scary decision to make (i was pretty scared in the beginning) but you know.... I am Sooo glad i started it, it's lowered my platelets and i only require a phleb. like 3x's a year.  Much better than before! horrible headaches, dizzy and blood vessel bursts on hands. I will pray that you have peace over whatever decisions you need to make. Please take care!


    Pauline, how are you doing? Did all those dizzy spells finally leave you? and how are you doing on the hydrea?


    Pegetha, great news that you didn't need a phleb! yea!!   and i'm glad that you will be having a lil' spring vacation soon! hopefully the weather will let up some and you can go outside and enjoy your garden!   I will keep you in my prayers for what's going on in you, and i'm glad you're in-tune with it and will be asking the doctor for some test.  Take care of yourself.


    Dee, i hope you got to enjoy the weekend a bit? Praying for all the pain that you go through and that you get some ground answers on what it is that's going on in there! and that they have the solution to take care of it!!  Man..... i will party all the way here from Calif with you!!!  Do that Dance of Joy!!!  In the meantime.... you know i'm praying for you always!


    Mimi, that FS doll sounded like the coolest project!! (for your lil' guy too Colleen) i think that's an awesome assingment! I bet Nicholas is going to be so excited when he gets it back! and you're such a great sport for all that stuff!  he picked the perfect person!


    Everyone, please take care!! and do get sometime for yourselfs!    (i know, i know Dee..... for me to do the same! lol...)  I will! promise!

  • 603. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    DEE11 Registered Users
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    Emily sorry to hear about your grandfather.

    Sarah be glad when you see the doc weds. Colleen i ,m not up on Flat Stanley my grandson had it mailed straight to Mimi (HIS GRAN MIMI)She gave me the heads up about what it was all about.And it should be back to the school by now.

    Pauline is,nt it nice hwen the pain leaves amkes us s grateful even if its for a short period of in your case hopefully forever.(except the wine lol)

    Seems like here is alot of people having med changes.i just pray that it works for each of you.Hvae gr8 nite tata=D

  • 604. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    SAKI Registered Users
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    Emily, So sorry for your loss of your Grandfather. I lost my Grandpa about 4 years ago- he made it to the ripe old age of 91! My Grams followed about a year later. It was actually a blessing for him to go first as Grams had progressed pretty well into Alzheimers/dementia by then so in a way as hard as it was for him to be gone (he was still lucid, onery and opinionated, but very much mentally intact!) she didn't really know the difference. On one of my last visits with her she thought I was my mom- as a child. Praying for your family- I hope that this time of loss can also be a time to celebrate his life. SAKI

  • 605. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    SAKI Registered Users
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    Well looks like my expected two month hiatus from bloodwork is going to be just one month- apparently I now need to have my platelets checked before routine dental work! So we'll get to see how I'm doing before Easter- which is really a relief as we're planning a trip with the kids to see their cousins for Spring break! I'm feeling fine so hopefully it's all routine to make sure the dosage is still at the right amount. On a completely unrelated subject my little Rebekah (2.5 years old) is potty trained! Hooray! As sad as it is that we are probably out of the diaper phase for good now it's great! My son Robert (5) had a great appt at the Ear Nose Throat Dr and once we are back home from travelling he's scheduled to have his adenoids removed. Hopefully this will take care of his snoring and mouth breathing. Poir little guy doesn't know that breathing thru his mouth 98% of the time isn't normal. His voice will probably change but he should sleep better and will probably be able to go off the allergy meds completely. It's raken ocer 4 years to get this diagnosis. Well, busy week ahead! You are all in my thoughts & prayers. SAKI

  • 606. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    lkbanks Registered Users
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    Emily,so sorry to hear that your grandfather has passed away.I have you and your family in my prayers.God Bless You......LindaK

  • 607. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Pauli Registered Users
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    Emily, I am so sorry to hear about the passing of your grandpa!   You and your family are in my prayers!  May you receive the comfort that you need right now! Hold on, girl, we love you!

    Pauli

  • 608. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Pauli Registered Users
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    Sarah,

    Thanks for your prayers for my kids!  I really appreciate it.  They have been through so much lately!  We are leaving here, California, on April1 and will be going back home.  I have an appointment with my hematologist, I think it is the 4th of May.  I will have more blood work done the week before.  He is doing more then just a CBC then, so I guess that will probably be "decision day"!  I have basically come to the conclusion that I will have to take the hydrea, because my platelets just keep getting higher.  God knows and I will trust Him with the whole thing. 

    Hope everyone has a great, pain free week!  You are all in my thoughts and prayers/

    love Pauli

  • 609. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    DEE11 Registered Users
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    Saki my grandson he,s going to be 7 next month had all sorts of problems with breathing draining in his ear sleepless nights.They wanted to operate but a friend told his parents about this chirropractor who worked with children like this.To be honest i was,nt sure it would even work.But to my surprise he,s breathing better and sleeping through the night without sounding like an ol man snoring.Not sure if this is a fix all.But we,ll see.I,m just throwing this out there not really sure why lol.Everyone take care

  • 610. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Emily87 Registered Users
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    Thanks so much you guys. I'm glad I got to be with him when he passed. It was very peaceful. For a few moments, we didn't even notice that he was gone. He slipped quietly away saturday afternoon at about 2:25pm (CST). The funeral will be tomorrow at 12:30, so if you guys wouldn't mind saying a couple prayers that my father and everyone will make it thru OK, I'd really appreciate it.

     

    This has been really hard on my dad and my uncle. Their parents have never been sick in their lives really up until about 5 or 6 years ago. They made it into their mid 80s before any serious issues. My grandfather had prostate cancer, and kicked its butt. Recovered very well from chemo and radiaition, went on to have a mild stroke, recovered from that. Grandma has dimentia, and depression, so this blow has been very hard on her. She's getting more and moer forgetful by the hour. When we were at the funeral home scheduling everything she kept giving her dad's name in place of my grandfather's on all the information.

     

    She is still wanting to stay in the house, and not go into a nursing home. Poor lady can't take care of herself though. She has no idea about their bills, their credit accounts, where they have their insurance, anything. We don't want to have to get power of attorney granted to us. . we'd rather have her settle into the idea of being taken care of on her own. We don't want to force her into this, since she's already so unhappy, but at the same time. . for her own safety she shouldn't be alone. It's just so hard to see her like this. I have never seen my grandmother cry until saturday afternoon, and she was just so miserable. She and my grandfather have known each other since elementary school, and been married since high school. . . she doesn't know what to do without him. She's so weak, she can't walk on her own, she certainly can't drive. I just see her declining very rapidly unfortunately.

     

    Ahh well, I need to get back to work for now. I'll be gone from work the next couple of days for the funeral, and then helping my dad with everything over at their house, getting things cleared out and organized.

     

    ((((everyone))))

     

    Emily

  • 611. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
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    Emily, just know that we are here for you dear ok.  it is not an easy time sorting out all that needs done. but once its all done emily you can get on with healing and time will help you and you will be fine.  you have a supportive partner and family.  You and all your family are in my thoughts Emily...   Take care now my dear.. all my love pauline

  • 612. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    cms9978 Registered Users
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    Emily I am sorry to hear about your grandfather.  I also just lost a dear friend of the family that might as well been family.  Everyone called her Ma.  Her funeral was today.  She passed away about an year after her husband "Pa" had left this world.   It is always sad to have one you loved be lost.  But to know that in the future a long time away you will see them again.  I know and feel the lost that you are feeling.  At least we have everyone here to help us get through all of our heartaches.  Just know that we are here if you need anything.  Hugs and KissesColleen

  • 613. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    nanny Registered Users
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    Dear Emily, My heartfelt sympathy goes out to you and your loved one's during this difficult time. I am also glad you were with your Grandfather and saw his peaceful passing.  I am already saying prayer's for you and your family for the funeral tomorrow.  That is beautiful to hear that your grandparents go back to elementary school.   They don't make marriage's like that anymore, they were very blessed with all their time together and most of them being in good health.    I know you will be there for your Grandma.  I also know you will be there for you dad and uncle and mentioned taking some days to help them at their house.  Just remember to take some time for yourself to grieve and also celebrate your Grandfather's LIFE.  It is so hard for me at age 57  to fathom that you are such a young KID.  You are so much older and wiser than your years since you got you dx at 18.  GOD WORKS IN MYSTERIOUS WAYS AND I DON'T KNOW WHAT HIS PLAN IS FOR YOU BUT YOU JUST HANG IN THERE BECAUSE I THINK IT'S GOING TO BE AWESOME (HEALTHWISE AND IN YOUR PERSONAL LIFE)   I am also sending you a VIRTUAL HUG:)       LOVE AND PRAYERS    NANNY

  • 614. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Pauli Registered Users
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    We will be continuing to pray, Emily!  God will be with you and see you through!  Your dad and uncle and grandma, too!

    we love you!

    Pauli

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