The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,155. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    Hi All,

    I just came back from getting bloodwork at Hem/Onc.office. My Hgb. was 14.8  and my Hct. was 40.7 !  Good results this week !  I see Doc. on May 15th. He came out to lobby and was very happy with results today ! In March my Hgb. was 16.4 and my Hct. was 46.1 !  Last phleb. was 1/31/12  I am on alot of HU.  M-W-F 1500mg

    Tues.- Thurs. Sat. Sun. 1,000 mg. Funny, I was kidding with the techs that it's ashame we can't check our blood levels at home in the interim so PV wasn't such a hit or miss game when it comes to our blood thickness levels.

    Hope all the veterans and newbies are doing well. I am in Phila. Pa and the weather is gorgeous !

    Take Care,

     

    Brian

  • 1,156. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Brian: Hello, just so you can keep track, always remember that whatever your HGB is , you times that by "3" and that's your HCT.  I believe Neil has said a mans HCT should be about 45.  At your present counts: 14.8 means your HCT is 44.5 which is good, but at 16.4 that means your HCT is 49.2 which is high. So watch your counts carefully. Neil is our go to guy here, so maybe he'll weigh in on this issue also for you. We all just want you to be good.

    Patti

  • 1,157. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    hbneil Registered Users
    Currently Being Moderated

    Hematocrit vs Hemoglobin


    Hemoglobin is the part of the blood that can carry oxygen.  It is measured in grams per deciliter.

    Hematocrit is the percentage of your blood that is red blood cells.  It is measured in percent.  Typically, they take a small sample of blood and centrifuge it.  It separates into red and mostly clear liquid.  The red is the red blood cells.  When you look at the separated liquids, if the red liquid is 45% of the height of the combined liquids, then you have a hematocrit of 45%.

     

    Although the two are related because hemoglobin is in the red blood cells, the hematocrit is not 3 X the hemoglobin.  You can have the same hemoglobin level and different hematocrit percentages.  The biggest cause of fluctuations is how hydrated you are.  If you are dehydrated, the percentage of red blood cells is higher because you have less plasma.

     

    Neil

  • 1,158. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bubs11 Registered Users
    Currently Being Moderated

    hi everyone, and thanks Mimi for your kind words welcoming me.  just returned from the doc and I am so pleased and relieved.  My platelets went from almost 800 to 460. And my hematocrit went down from 56 to 40.6.   I am anemic but he said the same thing as you did - that it has to be as that keeps the red cells lower.  he said that I don't need a BMB, that my condition (PCV) is very clear.  He wants to see me next in 6 weeks and I don't need  phlebotomies until he re- evaluates, but I have to keep taking the hydroxureia.  first he said to take  eight a week instead of seven, but then when I told him that I took my last one four days ago then ran out of them, he changed his mind a said to stick to one per day. (500mg).   He told me that he didn't want me to worry more thn I already was last month, but  I was really "a walking time bomb.".  That totally freaked me out.  We were going to go away for vacation at that time and just by pure chance I decided to see my GP before the trip instead of after.  Can you imagine if I had waited.    today the doc told me that if I was younger, he would have thought of doing a bone marrow transplant.  this is one time I am so happy that I am not younger.    he reminded me that this is for life and not to be upset if when I come back in six weeks things might not look quite as rosy as they do today.   He really took the time to explain, even drawing diagrams to show me what's happening.  One would never know, sitting on his office that he has a huge waiting room full of people.  hope everyone is okay.  Oh, and Neil, yes my husband has been coming to all appointments with me, although he has a problem - he almost just has to hear the word  BLOOD and he is ready to faint.   it is kind of very funny.  but, seriously he's been great through all this so far.  Prend garde  tout la monde.  (That means  take care everyone). 

  • 1,159. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Neil: I was told this by Dr. Mesa and Dr. Camoriano at the Mayo clinic, so I thought it was accurite?  I will again check with them to be sure though.

    Patti

  • 1,160. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
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    Bub's (Carol):  The BMB would not be to confirm your PV. It would be a good baseline so down the road they have something to compare it to if things change. The MPD digest say's that "if you don't look, you can't see". I agree with that statement. It's like our mamograms, they compare our annual one with the previous ones. It's just a good rule of thumb to go by. Anyway, take one day at a time, and try to relax.

    Patti

  • 1,161. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    For the "ATM,S....(among the missing) Sarah ..Pegetha....Hope all is well.

  • 1,162. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    buddyrider Registered Users
    Currently Being Moderated

    Bubs please dont try and think too much about what would have been, all the if's and buts....these are all things we have to deal with to then, accept our illness...so what your all going through is totally understandable and we have all been there.  We all take time to digest and time to understand what the heck has happened to our bodies, which is beyond our control...and for that, yes we do feel scared and no what we have wont go away but it is managable with good care.  I was also told i was a ticking time bomb, not nice to hear huh, but it sure spooked the hell out of me too, so i understand where you are there.  In time all will settle and you will be more able to relax and take in and digest all thats going on.  We all know what your going through and feeling, so you aint alone

     

    I go for my cbc next thursday, i thought it was this thursday but i got the dates mixed up lol but its defo next thursday 26th.  Will keep you all informed as to my counts. 

    love to all wee pea

  • 1,163. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Hi Carol! I don't think i've introduced myself yet, sorry it took me awhile..... I'm Sarah, dx'd with PV in late '03, i'm on 500mg HU daily, except for M,W,F  i take 1000mg. and on 81mg  Aspirin (as most everyone). Phlebs alone worked in the beginning, until '08 when i was put on HU.,  Carol, you stated that your doc (hem/onc?) said that he would've done a bone- marrow trasplant (if you were younger)... well, i'm glad he didn't. In my viewpoint... I feel they usually start at the lowest treatment plan possible. thus being phlebs., then HU (or other)........  But, anyways, it didn't happen, and i'm glad!

    I see others have given you great advice. This group is as an extended family to me, and i'm glad you've joined us (sorry you had to) but... the support and caring from everyone is a huge blessing.  I will add that you should try to get your HU refills as soon as it is possible with your ins. to do so. that way you never run out, and if you keep doing that, you will find that one day you'll have a few weeks stocked up. (i know this gives me some assurance of just incase......)  and yes, keep copies of everything.  I'm happy to hear that your counts are now good!!  great job!   Once again.... Welcome!!

  • 1,164. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!!!

    I'm still here....... just been naughty about not posting.  Thanks for rattling me Dee!   And tell me... have you had your hem appt. yet? or was it the 28th?  I'm sorry, i know i've asked this same question several times before, but my brain and memory just don't keep up with me!   And how are you doing sweetie?? I so worry about you!  Is the spleen  still the same on-off deal? And how is all the pain right now?  I hope that you get a chance to take a day off as well and just relax doing whatever makes you Happy and Relaxed!   Praying for you kiddo....

     

    weePea, it's great to see you onboard! I miss your posts when you stay gone.... I know you must be getting excited about your visit to 'America' again! woohoo.........     and how are your counts my dear??

     

    Mimi, always great to hear that you are doing well!! You bounce with these surges of energy.... 'throw one of them my way!'   I would love that! ...

     

    Patti, i hope you are enjoying yourself at your daughters and also getting some relax time!   When do you start your trip again?

     

    Pegetha, i keep you in my prayers   please send us a quick update as to how you are doing.... I worry also about you. How are you coming along with the Jakafi?

     

    Julie, i have kept you and your family in my prayers, and will continue to do so   Keep hanging strong my dear. One day at a time! And please...... take care of yourself, i know things are so hard right now, but you have to take care of you

     

    Everyone else, know that i pray for everyone here.... i truly do, and wish you all pain free days, and better and brighter tomorrows!!   God Bless you all.........   Sarah

  • 1,165. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    I went to the lab and pcp last week. My previous visit had showed my GFR at 42.2 in Feb. and it's now  97.1  so that was interesting and good.  He switched one bp med, i hope is better.

     

    Today i went to hem. appt. and my counts are:  hct>47.3    hgb>15.9  plts>439  so we've been seeing my #'s starting to creep up slowly. .... Last visit last month the hem. told me that if the counts were the same or higher, she'd need to raise my HU..... and funny, but this visit she says; well, your #'s are staying pretty steady there, so we'll leave everything the same and see you in 3month.....  But, i insisted on speaking with the 'Attending Physician' (which is my old hem/onc) and when she  came in, she was so nice. and she told the hem.to place a phlebotomy order for me (the 'training hem') had never heard of it before. So she had a lesson  on it, and i was so thankful that they got me into the blood donor dept. this very same day!!  So i had my 500cc phleb today. and so glad to say it all went great! (it's my first phleb. in 2 1/2yrs!) so we'll see if this takes care of the problem?

     

    I'm tired........... Goodnight!

  • 1,166. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    Hi All,

    I enjoy this website so much ! The fact that we have a rare disease doesn't feel like that when we all communicate on here !  We have so many commonalities amongst one another. Many of you have been dx many moons ago and are veterans so to speak. I was dx this past Nov. 9, 2011. The date you never forget !

    So I'm relatively new but learning quickly by listening, reading, and being on here with such a supportive group. One question I have is that I am about to apply for regular Soc. Security. A friend reminded me that with our illness it qualifies for Soc. Sec. Disability. My question is has anyone applied, was it difficult to get,  and were you approved for SSD ? Interested in hearing back on this topic.

     

    ONE DAY AT A TIME !

     

    Brian

  • 1,167. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bubs11 Registered Users
    Currently Being Moderated

    Hi Sarah,  Thanks so much.  It so helps to know so many people care.  When I read your note, my eyes geared up.  It came at just the right time, although any time is the right time.  I was calming down somewhat after my apppointment the other day when told that all my counts are down, when last night I read that PV is Cancer.  I kind of new that but I guess I buried it way deep down, but now reading it, I was up all night, just repeating to myself, "I have cancer".  I better get a grip, right?  so glad your phlebotomy went well.  do you get tired, like in no energy for the day after?  My doctor did give me a new prescription for an 8 week supply of hydrea.  So i shouldn't be running out again.  Tell me, how do I get to this site quickly?  I seem to have to click on so many things  and i have to type in somewhere what i am looking for and then I am so happy and surprised when I get here.  it seems to work different each time.   I it so wonderful to meet you.  Take care and we'll talk real soon.  CArol

  • 1,168. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    Hi Carol,

    It is a pleasure to read your thoughts and insights into our PV disorder CANCER !

    I think about it everyday but live life to its fullest each day !

     

    ONE DAY AT A TIME !

     

    Brian

  • 1,169. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Hey Dee.... If you get to read this before you leave in the morning, i just want you to know that am so lifting prayers for your hem. appt. today!   Please don't let that doctor keep you on the wait and see plan anymore. You have been waiting far too long and suffering with pain. I'm sure if it was one of his family members going through what you are, he wouldn't just keep waiting! Please know that i am here for you sweetie...  you are one tough cookie, show him what you got!

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