The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 555. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    hbneil Registered Users
    Currently Being Moderated

    Coleen, I enjoyed the pictures.  I guess Rod Carew is helping LLS fund raising at cities where he used to play pro baseball.  Rod was also a speaker at the Light the Night event that Sarah and I participated in.  I hope you enjoyed your event as much as Sarah and I did.  I always want to place a face with a name for our little Blood Buddies group.  Where are you in the pictures?


    I had my cytoscopy yesterday.  I was a little worried about the proceedure but it wasn't as bad as I had expected.  I'm happy to report that they didn't find anything abnormal other than my enlarged prostrate, which I've know about for years.  Time to move on past the nephrologists and the urologists and concentrate on my PV.


    Tomorrow, my wife and I fly to Fort Worth, TX for my neice's wedding.  We haven't seen my side of the family in over 6 years so we're looking forward to it.  As a bonus my son, daughter-in-law, and daughter will also be there.  Our immediate family hasn't been all together for several months.  I'm excited!

     

    Take care everyone,


    Neil

  • 556. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Emily87 Registered Users
    Currently Being Moderated

    Hey everyone, hope you're all well. I'm glad to see so many of you involved in Light The Night. It is a wonderful cause.

     

    I usually walk in Light The Night also, but this year, I am trying something different. I am hosting my own fund raiser specifically for the MPN Research Foundation. MPN Research Foundation focuses on promoting and funding innovative research specifically for the treatment of MPNs. I will be hosting Costumes For Cures on 10/29/11 at my home. It is small scale, but I am hopeful that it will get larger with each passing year. The gist of the event is: $10 donation at the door gets you beer/soda/snacks all night. There will be a costume contest, a Halloween Themed Trivia event and possible Poker Tournament. There will of course be prizes for the winners of the contests. If anyone would like more info please e-mail CostumesForCures@gmail.com, or visit http://www.firstgiving.com/fundraiser/costumesforcures/costumesforcures.

     

    Thanks, Em

    http://mpnrf.blogspot.com

  • 557. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    cms9978 Registered Users
    Currently Being Moderated

    I was behind the camera...did get a few pics of me...but the are dark...I am the one licking to ice cream cone!  Rod Crew was involved last year and again this year...We had a great time!Colleen

  • 558. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Hello Everyone: Sorry I haven't posted much, but alot of changes going on here. We are moving away from the oregon coast finally after 6 1/2 years here. I just can't take another 7-8 months of all the pouring rain and winds. It's been very stressful and have had alot to do. The folks we have worked for here are not treating us very well since giving our notice, so that's been difficult. The good news is I contacted Dr. Meas about these iron infusions I've had for the last 3 years, and he sent me to a colleauge of his in Portland and between the both of them, I've finally found some great Dr's. They made me promise "NO MORE IRON INFUSIONS"!!!  Yee Haw!!!  Until we get settled somewhere they will both be monitering me from wherever I'am. We will be leaving here on Saturday Oct.1 st. and I'm ready for a new adventure. And some quiet again finally. Just know I think of you all, daily, and hope all are doing well, and getting the care you deserve.  Hug's to everyone,  Patti

  • 559. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    lkbanks Registered Users
    Currently Being Moderated

    Patti,good luck on the move.Moving can be stressfull so take care of yourself.Have a Bless Day...LindaK

  • 560. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Thnaks Linda, we will,  Patti

  • 561. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    macnanna Registered Users
    Currently Being Moderated

    have a safe trip patti and take care. love jules xo

  • 562. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    macnanna Registered Users
    Currently Being Moderated

    Hi everyone,

                          well they decided to wait on giving me interferon, as my platelets are down to 615. so i was pleased about that, there going to wait for anougher 2 fbc results. hopefully they will go down even more and they will reduce this 3,ooomg a day of hu. how is every one going? Hope your all going good , best wishes jules xo

  • 563. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    lkbanks Registered Users
    Currently Being Moderated

    Hello Jules,glad to hear that news,hopefully your counts(platelets) will keep going down and same for your meds.

    Something has been going on with me lately. My breathing is off a little. Yesterday after lunch I walked back into the building (climbed only 5 steps up to the door) and by the time I got to my work station

    I was out of breath.Kinda freaked me out.I walk at break everyday.Took my BP,it was137/77.Heart rate was 109.Called hem/onc office,Doc wasn't there.Talked to nurse and was told to call my pcp.So this morning went to see him.Did chest xrays and blood work and they look good,so he wants me to go see a lung dr.Just to see that with my ET maybe it was small clots that the xray didn't show.I did not have any pain at all in my chest so ruled out heart.Ok,it probably nothing to worry about.Maybe I'm just getting old and fat.Need to change a few things in my lifestyle.....LindaK

  • 564. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Linda sorry to hear about your breathing .With me it was the spleen is there any chance of your spleen starting to enlarge ?Glad they are checking your lungs.Please keep us posted.Jules lets pray your counts keep going down.Mine were high in 2000.After many years they tend to go the other way with PV./PMF..Good luck and hope everyone feels ok.Huggers =D

  • 565. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Ik: I sure hope they can figure out what caused the breathing problems, so that doesn't happen again. I'm glad you are getting this checked out.   Take care of yourself, Patti

  • 566. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!

    Sorry i haven't posted, but seems i'm always running about like a chicken without a head!

     

    Patti.... I'm so happy that you won't have to go through another wet and soggy winter! I know you are so burned out on it!...  My Blessings to you and Jay and (i'm sorry... my memory is lapsing on your other family member/ your doggie) the name is sitting right there on mind and it won't come to me! .... arg... my memory is the pits! lol....    I hope you are getting help with all the hard work of packing, Please  take care of yourself! and keep in touch (don't lose my #) okay!


    Linda, i will lift a prayer that all is ok... you are smart to get it checked out.  I don't know, and i didn't see anyone else mention this, but... on my paper that comes with my HU, it does have something about the breathing on it (can't remember how it was worded, irregular heart rate? or other, can't remember and couldn't find the paper right now (of course! lol...)  but i do remember reading something.  I will pray that you feel better, and for wisdom from the doctors. take care of yourself.

     

    Colleen, i'm glad to know hear that you were able to participate in LTN again! how awesome!!  I did get to see some of your pictures and looks like you and your family had a grand time! way to go!!   you look great! and so does your family!  keep taking care of yourself....

     

    Julie, i'm so glad to know that your #'s keep going down! yahoo!!.... keep up the good work!


    Dee & Pegetha, i hope that you tough cookies are still hanging in there ok!! I pray much for you both

     

    Neil,  so happy that you are getting to see your family!! how wonderful to be able to have everyone together for the special occassion of the wedding. I hope you have a Fantabulous time! and i'm sure you will take Lots of pictures! (Julie told me you loveee to take pic!)   so do i.... keeps the memories close!


    Mimi, our Southern Belle.... I get so super jazzed that you continue to do great!!   take care mi amiga!


    weePea, glad you are getting back into your routine of work and that things are still good for you too!! and your lil' Charlie is so adorable!!


    Pauli, where are you?? we miss you......


    I'm sorry if i've missed some.... but wishing everyone the Best!!! and prayers for all of you!!

  • 567. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Sarah:  Thanks for the good wishes!  And my Doggie's name Is "Max", lol. My memory isn't so good either so don't feel bad. Yes today will be our last day here!  We will go see the Daughter in Southern Oregon first, then go to Northern Calif to see the other girl and grandkid's. Jay has a temporary chef job there till mid- November. We have found a RV park near her home there, that's reasonable, for a month stay. I'm starting to feel like a gypsy, but at least we have our RV and a roof over our heads.  All will be ok, as My hubby is a go getter. Thanks for the loving support!!! Patti

  • 568. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Patti hope your new adventure holds gret promises.Sarah what a great job on the light the night !!!!!.Linda please let us know when they check your lungs and what they said !!!Praying for all.Sorry for the shory post .Gotta go huggers =D

  • 569. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Dee: Thanks for the love & support with the move! it's a difficult one, but all will be alright.  Patti

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