The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,185. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    Carol, I purchased an automatic BP machine at a local pharmacy. It was not expensive and pretty accurate. I purchased it right after I went to my urologist last year (pre PV dx  and pre BP meds) and when the nurse took my BP it was 200 over 170  WOW WOW WOW !!!! She said sir do you feel ok ? You are in some serious trouble here !  Do you have a headache ?  I guess they thought I was going to have a stroke right there in the office. I probably was a walking time bomb and didn't  know it !  So on to my GP and Hem/Onc  = PV !   That's some formula !  Today my BP is now 137/ 85

    We all have plenty of stories to share ! You raise some food for thought  concerning  remission and leukemia. The other day I went on line to see if any famous people had PV. Interesting stuff !

    Hope everyone is doing the best they can. I am more fatigued today then usual.  I wish there was a machine or gadget at home so you could check your blood levels occasionally and not get caught up in this waiting game until your next  appointment which could be a month or two.

     

    Brian

  • 1,186. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bubs11 Registered Users
    Currently Being Moderated

    Hi Brian,  Thanks for the suggestion..  how come I didn't think of buying a BP machine?  that is a great idea.  Hope I don't have brain freeze!  that would just be over kill.lol.   I am going to buy one tomorrow.   And yes, it would be great if we could check our blood levels instead of waiting six weeks and worrying and wondering.  I also was dx'd  as a result of very high bp.  I must say thank god, because I had no other symptoms and the doc  also told me I was a walking time bomb.  I was feeling much better today and I am sure it was because my bp was probably okay.  I didn't take my pill this morning, but I guess I will have to take it tomorrow .  I can't become my own doctor.   I will  bring it up to my doc on Wednesday.  I am going to a new one.  I am so angry at the one I was going to for years.  I think I told everyone that he did refer me to an excellent haem/onc  But I couldn't get an appointment for two months and my doc told me that he is trying his best to get me in earlier.  Fact of the matter is I found out that he never made a phone call.  My haem/onc said that if he would have called him, he would have seen me within the week.  I had also asked for a referral to redo the original blood tests just to make sure there was no mistake and he wouldn't give me one.   it is almost impossible  here in Montreal to get a new doctor as  they all don't take new patients, but I lucky in that my brother-in-law's cousin is a well known GP and he called him for me and he in turn gave me that referral for new tests and said he would take me and my hubby on.  he also, from the very beginning told me to keep him informed as to what the dx is and what is going on.   ( and he didn't even know me and there was no talk of me becoming his patient yet.  He was just being human.)  My original doctor never asked, never followed up, even to this day and he doesn't know that I am not going back to him.  I see no reason to call him after the way I was treated.  would you have done the same?  anyway that is all in the past.  SO SORRY!  I don't know why I am rambling on.    Fact of the matter is I was dx'd.  I do have PV and hopefully I am on the right course of treatment.   I am sorry you were more tired than usual today.  hope tomorrow will be better.  have a food night,  Carol

  • 1,187. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!

    yes, i too am not getting the emails from here anymore, think i get just a few, but can't remember when the last one was?

     

    Dee, thanks and it is because of you and Patti and the others whom push me to be assertive with my docs that help me too, so thanks and if the phleb doesn't get my counts in check, then i will ask to see my old onc. again and see about raising my HU (or see what else she thinks should be done).

     

    I'm so glad to know that your hem. is pushing for the Jakafi for you Dee. I will pray that the ins. co. will release the approval quickly. The pain that you have to endure breaks my heart for you. I know you have so much on your schedule to do everyday, and with the pain levels like that it must be really hard on you. Makes me feel so helpless, but the one thing i can do is... keep praying for strength for you hang in there sweetie. I remember you saying since quite awhile ago about the water retention and not being able to urinate as before. Geez... wished i knew some answers for that. What does the doctor say?  and one last thing.... I'm glad they are checking you out Dee, but i'm starting to worry that maybe there's been to many scans done? I know they have to, but it still worries me a bit.

     

    LaVae, good news on your counts! yea!! and i hope that your sisters counts are just a random thing that happened  to offset her counts, and that they change. Sometimes different things (meds, or other) can cause our counts to change for a bit. I recently had a lil' scare about my GFR count, it had dropped down pretty low, but within 2 months? it changed back to normal. So i hope this is the case for your sister.

     

    Pegetha, i'm worried about you. Please put a quick post or email one of us to let us know how you are. I'm concerned of how your body is handling the Jakafi? I am lifting prayers for you my dear .....  and also that those pesky germs at school stay away from you!  I know you are dealing with so much. Hang in there sweetie!

     

    oh.... geezzzzzzzzzzzz..... i just did something and lost all the last part of the post i had typed!!!  arrggg!!!   i better what i was able to safe......

  • 1,188. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    TO OUR SARAH.......................................

     

     

                            HAPPY BIRTHDAY ~~~HAPPY BIRTHDAY ~~~~HAPPY BIRTHDAY~~~~

    you are always a ray of sunshine and deserve so much more.Prayers back to you for the docs also to start waking up and helping you.May you bday be special and know we are with you in spirit!!!! many huggers =D

  • 1,189. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    as far as bnot getting any emails .Can everyone click th contact button on the bottom of this page and tell the LLS commnity about the issue Thanks.

  • 1,190. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    SARAH:   Happy Happy Birthday to you!!!!  Love & Hug's, Patti

  • 1,191. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    Wow, what is going on in Montreal with Docs ? I would have reported him !  Montreal is such a beautiful city. Anyway blood pressure medicine can have many side effects. If prescribed you need to take it. But there are many types out there. See your new Doc. about it. In the meantime don't miss a day !

    Sarah Happy  Birthday !   If it's today 4/23   then this is also my son's 30th today !!

    Brian

  • 1,192. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bubs11 Registered Users
    Currently Being Moderated

    Thanks Brian,  I will take my meds this a.m. And am anxious to talk with my new doc about it on Wednesday.   Yes, we really do have a doctor problem here.  Many, many people state that they are not happy with theirs but they can't leave as they would be without one.  Three cheers for Medicare!     Happy 30th to your son.  It is a big birthday for them.       Sarah,  Happy Birthday!!!!!   Carol

  • 1,193. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Thank you everyone for the Birthday wishes!! it will help me deal a bit better with my big '56!'   lol....

    and Dee, you say such kind words... bless you!

     

    Carol 'Happy Birthday to your Son also!'   yes, 30 is a very special time in your life!  my bday will be tomorrow the 24th.

     

    God Bless Everyone here!! may you have a blessed day tomorrow and may the pains go away!!!!!!!!!!!!!!!

  • 1,194. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    p.s.

    Dee, i can't seem to figure out how to post through the contact.... so i went through 'report abuse' duh me!! lol.... but hopefully they will get it anyways.

  • 1,195. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Well at least they might get the message anyway lol.I know a few of us have contacted them via email.Maybe they are,nt getting there emails.Oh  well   .Just have to remember to keep checking daily.Got spoiled with replies being sent to my mail.Also went to other page and saw most of the topics were about soccer ?????So i,m not sure whats going on here..Time wlll tell.My ultra sound will be on 5/4.You can bet the spleen will be have then.But its not always about how enlared it gets its mostly how it feels.But we,ll see if this has any neg ,reaction to getting on the jakafi Huggers to all ..i really need a coffee.=D

  • 1,196. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    PS ..on the top right of this page i re- clicked recieve email notifications .we,ll see if it makes diff.Its too too early for this tech stuff lol...only click it once.Then after it goes through it will say "stop email ntifications." so do not re click it.

  • 1,197. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Yes me agn.Just want everyone with a DX of ET MF OR PV .That the genetic testing of "23 and me" is free.Please read about it at 23andme.com.  Its a great way to find out alot of info.Even relatives.Privacy and how much is up to you.It even tells you if your a carrier of certain diseases.There is so much info i cannot even cover it.You will be sent a spit kit ,just follow the instructions.Takes about 6-8 weeks for results and they will be emailed to you.Theres forums and blogs if you chose to char about differant traits.You,ll find out your ethnic background etc.Its a great tool and will also help provide answers for research..This is an oppurtunity that should nt be ignored.Good luck !!!!

  • 1,198. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Laflemke Registered Users
    Currently Being Moderated

    Hi Dee,   How is it free?   I went to the site and it looks like it is 99.00. Plus 9.00 per month or there are other packages to purchase.   Am I looking at the wrong thing?  

    LaVae

  • 1,199. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bubs11 Registered Users
    Currently Being Moderated

    Hi Everyone,  I second LaVae's observation.  I also went to 23and me and saw:   $99.00 plus $9.00 per month and you must take a one year membership (minimum).  I also e-mailed  telling them that we're not getting notifications in our in box any more.  We'll see what happens.  Hope everyone is okay.  I'm off to th new doc tomorrow.  Wish me luck.  I hope he concurs with everything I am taking so far.  I have to talk to him about my bp meds.  I keep thinking or I should say feeling like my bp is way too low when in fact, I checked it yesterday and it was too high (149/94.) Very weird.  this is the first Tuesday in a while that I didn't need to go for a phlebotomy.  Whoopee!!!!!!  have a great night.

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