The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,200. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
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    Pegatha i wish they would just get the vein first time too but its been many jabs the past few tmies i have been for cbc, but although they are sore i know i need to get the samples eh.. so i just try and grin and bear it the best i can.  How are you getting on?  When is your vacation over? I do hope your UTI has gone now before startng back at work.

    Pauli yes i was glad i did not need another phleb, i think if i had had a phleb i would have just broke down as i dont need any more stuff to stress me any more that i am already huh!!  Pauli i hope all goes well with your doctor.  If you cant sleep without taking the tablet at night, it means your not ready to come off them just now, hang in there you'll get there....you need your sleep.  Have fun away and take care ok keep us posted.

    Dee how are you getting on?  I will have the forum wedcam on to see where you are hiding!!!  whare are ya huh???  I know your going through a rough spell but know we are all here for you

    Charles nice to meet you.  I am Pauline (wee p, buddyrider) 39, dignosed with pv june 09. I live in Scotland.  Welcome back

     

    Everyone else i hope you are taking care of yourselves.  Oh Charles there is another guy on here but he has not posted for a while his name is Robert..

    wee p

  • 1,201. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Patti Registered Users
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    Welcome back Charles!  Good to hear from you again. I'm so sorry about the depression, and understand because I also went through something like that too. It was a difficult time. As far as any other men on our forum? if they are out there, it seems men don't always reach out as much as us ladies do? But we are here for any help and support you need!!!!

     

    Pegetha: Thanks for the thoughts! I'm sure all will be alright, I only wish that I didn't need yet more tests. But like Dee say's, "it is what it is" huh?

     

    Pauli: Wishing you luck on some good #'s on your up coming cbc!!! Have fun at camp, and I hope you can get some much needed sleep too!!!

     

    To everyone else:  Hope you are all alright, and know I'm thinking of you.     Hug's to all,  Patti

  • 1,202. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Emily87 Registered Users
    Currently Being Moderated

    Hey folks. Just dropping in real quick to say hi. I hope everyone is doing well. I'm having a pretty great week. Started my new position on monday, and I'm learning LOADS, and loving it. I feel so much better with this position than I did before. It's exciting. I will check in sometime this weekend and reply to everbody. I'm at the tail end of my lunch break right now, so I need to run, but I'll talk to you all soon, I hope!!

     

    ((((everyone))))

     

    Emily

  • 1,203. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    memy Registered Users
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    Hello CHARLES and a big welcome to you! I am Mimi , dx'd in '02 at age 51 with PV. I went phleb only with treatment for 6 yrs and due to my arms breaking down was then put on Hydrea, 500 mg daily and am doing well with my condition.........we do have males here but as a rule males don't stay with us for too long. Robert will pop in now and again to let us know what's up with him. But in general it's a great site for answers and general cacaraderie. Hope to hear more from you and once again, a big welcome to you!


    PS: CHARLES, THE BACK BAR IN YOUR PICTURE LOOKS A BIT FAMILIAR TO ME AND AS I AM FROM NEW ORLEANS, THOUGH IN '05 HUSBAND AND I MOVED TO PONCHATOULA (JUST 3 MONTHS PRIOR TO KATRINA) --ANYWAY, I ALSO NOTED THAT YOUR ZIP CODE IS That OF NEW ORLEANS! Could it be that you are residing in NO or  are you from there? My former zip code was 70124 ! Are we neighbors? If so, we have so much to share! My email is listed on my profile page and i encourage emails from anyone! I already have met one gal here, Isabel, who is from NO and we actually had friends in common. I went to NO and met her for lunch at Byblos on Magazine St. (I didn't mean to use upper case but am not going to re-write this on account if it!) Anyway the backbar looks like the place (can't recall the name)--but it's on Rampart near the auditorium and seems like it used to be Marti's)  Of course, I could be way off here--but wouldn't it be interesting if we are both from NO?!!

     

    Mimi McGuire

  • 1,204. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    memy Registered Users
    Currently Being Moderated

    Hello again CHARLES !!

    I just found your original post of about a year ago and can add: do not believe all you read as far as stats and all that sort--I have been living great with PV for 8 years--known about --and about 4-5 yrs there I went undiagnosed but was seeking medical attention to no avail. That stat that's out there for life expectancy is not updated nor is meant for those IN TREATMENT--more so it's meant for those who go undiagnosed and are not in treatment. That was one of the first Q's I posed to my HEMAC and that's the answer he gave me. Futhermore I have read stories on the forum about a guy's mom who had been living with it for over 30 yrs. I personally feel that if you're going to have something wrong with you, this isn't a bad one to have! I have been told to watch the size of my spleen and indeed I do have an enlarged spleen which has shown no sign of growth since '02. Doc does an ultra sound of epleen every couple of yrs though she doesn't think it's necesary as she palpates the area at each visit. AND, I had to have 16 phlebs upon dx to get my #'s down to proper range. I had one a week for 12 weeks and asked to have a month of as my arms were starting to ache--I don't know how it goes with you on a phleb, but it's always 3 or 4 sticks before they gain proper access to a viable vein--so after a month off, I had 4 more till my HCT got down to 42. But everyone is different and responds differently. The main thought is to go as long as one can before having to go on  med such as Hydrea--which many of are taking. I am 60 y/o and didn't start taking Hydrea for 6 yrs (58 y/o) in my treatment. It was due to my OLD veins finally saying NO to phlebs that made me have to go on the Hydrea. And I have yet to have a bad day due to the med. All in all, I have sailed through this illness and wish the same for you.( I have a bad day from time to time, but it's easy to handle) And though I'm presently on Hydrea, I still have to get an occasional phleb. So, there you have it--what all I know or can speak to about PV. I also have learned that it's a very mysterious condition! And just when I think I'm getting a true understanding of it, something new is thrown in the loop and it throws me into confusion--so I've quit trying to figure it out!

    That's my story and I'm sticking to it!


    Mimi              ( PS: I also see that you are from New Orleans--Go Saints!)  THAT'S  THE  NAPOLEON  HOUSE AND WHAT A GREAT PLACE IT  IS !  I  JUST RECOGNIZED  IT AND,  OF COURSE, YOUR ATTIRE HELPED  ME  NAIL IT!  I LOVE THE  NAPOLEON  HOUSE !

  • 1,205. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    memy Registered Users
    Currently Being Moderated

    *******SYDNEY:

    I WAS TRYING TO NOTIFY YOU OF MY CHANGE OF EMAIL ADDRESS AND I APPARENTLY DO NOT HAVE YOUR CURRENT EMAIL ADDRES AS IT KEEPS BEING RETURNED TO ME. WHAT'S UP, PADNER!!!  ANYWAY, MY NEW EMAIL ADDRESS IS LISTED ON MY PROFILE PAGE. YOU ARE STILL SLATED TO RECEIVE THE TRAVELING TEE WHENEVER IT GETS ROLLING AGAIN--IT'S IN A "HOLDING PATTERN" PRESENTLY!.............COLLEEN, WHAT'S UP WITH THE TEE--HAS IT BEEN SENT AS YET--JUST CHECKING--------????????????


    CIAO, MIMI      HOPE YOU ARE FARING WELL !!!

  • 1,206. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    cms9978 Registered Users
    Currently Being Moderated

    Hi Ya'll....Have a few minutes to stop in and say hi....I did send off the Tee to Pauli but she send that she was going to be out of town for a few days but will get it when she gets home....As for me I am tired and starting to have stomach problems again.....I am glad that peoples numbers are good....I will keep you in my prayers.....Got to run!Colleen

  • 1,207. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
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    Hi Colleen, great the t shirts is on its way again, YEHHHH!!!  .... great news that is.....  I know you have much happening in your household and i do hope you are taking time out for 'you'!  Ok my dear i am off to go get ready to go away for a couple of days, for a wee break from the house.  You take it easy ok

    wee p x

  • 1,208. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    memy Registered Users
    Currently Being Moderated

    Hey COLLEEN:


    I hope you and yours are faring well. How are the kids doing and what are they doing now--when do they have to go back to school? it seems like they don't get much of a summer break these days!?

    Thanks for putting the Tee in circulation again! I hope you enjoyed showing it to your family and friends--it sems that the Tee has taken on a life of it's own! And I'm hoping you got a pic of you and the kids with the Tee!

    I do hope you are feeling well and look forward to hearing from you soon, though I know how busy you are.

    Love and hugs, Mimi

  • 1,209. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    pegetha Registered Users
    Currently Being Moderated

    Wow, it's quiet on the MPD front.  I hope everyone is doing well, and just staying busy and having a good time.  I have less than a week of freedom left -- back to the grind middle of next week.  The kids won't be there until the following Monday.  The first week is always filled with teacher's meetings, workshops, planning, etc.

     

    It seemed that my summer break just sped by.  Too much of it was spent trotting from one doctor's office to another.  Oh, well, that's my "new normal," as they say.

     

    What a hot summer this has been, for most of the U.S., it seems.  I know I always complain about the cold weather in winter, but I think I'm ready for a break in the heat.

     

     

    Pegetha

  • 1,210. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    DEE11 Registered Users
    Currently Being Moderated

    Your right Pegetha it is quiet and i have been MIA as well.Hope everyone is enjoying the summer It does seem to fly by but this summer i dont mind.The heat has been brutal.Hope to hear from everyone and how they are feeling.Sarah has been MIA more than i have i pray she is alright.

    Patti hope you get some news about the biopsy soon.

    Charles whats going on with you ?Hope everyone can find the time to pop in...tata and hugs =D

  • 1,211. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!

    I'm sorry i've not been on, (haven't been able to)... but have kept you in my thoughts and prayers.


    Dee, i know things have gotten really bad for you. Seems that more and more just keeps adding on to all that's going on, how long has this hand/arm things been going on? good news about the spleen though! I'm sure your energy level is pretty low right now, are you dealing with more side effects due to the higher HU dose?  Praying much for you kiddo.... hang in there! you know you can do it! you are our lil' tough cookie! I hope they get cancellation and you can get in to see the Neurologist sooner......


    Patti, so do you have your appt. already for the biopsy? Praying for you much! (remember... you're stronger than you think!) you'll do fine   and how's your knee coming along?  Gosh... we are both in CA and our weather is so different! lol... actually the heat let up some here, but still hot!


    Pegetha, i can't believe it's almost time for you to go back to school! how time goes so fast!! My grandson still has until Sept. before he goes back.

    I'm keeping you in my prayers Pegetha.


    Pauli and Pauline, glad you both got some time to take off for a bit. We all need that....


    Charles, welcome back to the forum! glad you found your way over! Sounds like you and our dear Mimi have some NO things to share! how great


    Mimi, i'm so glad your Travelin' Tee is back in route!!!   hip hip hooray!!!  I'm so excited for the day you get it back! wished i could be there with you too and look at all of the pics and things........... how fun!!

    Everyone here.......... you are just awesome!   one good bloody team we are!!


    It's late and i need to get......... will try to come back on tomorrow.  nite, nite all...............    Sarah

  • 1,212. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
    Currently Being Moderated

    Sarah i sure did have a good time away, it was only a few days, but well worth it. How have you been keeping? 

    Dee how are you?  How is your arm and leg situation doing?  I cant begin to imagine how much all this is worrying you and not to forget the constant pain too.  Dee your a true soldier you really are.  We are all here for you   take it easy now ok and thats an order

    Patti i so wish you would get some thing done for your lack of energy...i will post you some duracel batteries huh!!  lol.. only kiddin my dear. i do hope they will do something for you soon... i know you have some health concerns going on just now, but we are all here for you ya know that. chin up and keep strong  

    Mimi ''''WAKE UP'''!!!!!!! LMAO...  how are you my dear?   

    Pegatha i am sorry its almost time for you to go back to work... i do hope you have enjoyed your break   I guess we all get a bit fed up with the constant doctor visits, but we need to keep up with it all huh!!  not an easy task at times!!!    take care ok  

    I wont go through everyone otherwise i will be here all night lol and i have stuff to do, well not really just watching tv...but i hope you are all doing well and your all in my thoughts....

    fae wee p

  • 1,213. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    lkbanks Registered Users
    Currently Being Moderated

    Hello to all my friends.Sorry I have not posted lately.I read the posts every nite but don't have the time to post something.All my counts are good,don't have to see the Dr. until Nov.

    My little dog (15 yrs.old) got sick and had to be put down.Me and my husband are heart sick about it.We got him when our last child left home.He was 6 weeks old.We really do miss him.

     

    Hope everyone is doing well.I know we all have our off days.Pauline glad you had a good time off,it helps to just get away sometimes.Paulie,how have you been doing?

    Mimi,when you get the tee shirt back,please post a picture of yourself wearing it.

    Patti ,I have forgotton when you are going to get that byopsy done.Hope you get it done soon,then you will know something.

    Hope everyone has a good week-end.....LindaK

  • 1,214. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    pegetha Registered Users
    Currently Being Moderated

    Hi, Linda, good to hear from you.  I'm sorry that you lost your dog.  We can become so attached to pets that they become like a member of the family.  (Closer than some members of my family!!)  I hope everyone is doing great, and having a good weekend.  Patti, did you ever get the biopsy and get the results?  I'm hoping that you haven't mentioned it again because the results were good and you just put it out of your mind.

     

    Good night, and hugs to all.

     

    Pegetha

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