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

    Happy Birthday Pauli and Happy belated Birthday Mimi.Hope you both had a great day.

         Sorry I haven't posted for a while,but today I come with great news(God is Great) my daughter is in remession from her CLL. Her onc. says it will come back but we hope not for a long time.So our prayers have been answered.Thank you all for the prayers and just being here for support.I love this group, you were a God send for me when I stumbled on to this site.

         I had my cbc this morning and the dr. uped my Hu to 2 a day.Was taking 2 every other day and 1 on the off day.Then his office called around 2:30 and asked if I could come back and take another blood test,said this cbc showed that I had high sodium count.I told them I lived an hour away,so they said come in on Monday and do another blood test.

          Anyone know about a high sodium count?....LindaK 

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

    Hi Everyone!

    Linda, great to hear from you! and even greater to hear the Wonderful news about your daughter being in remission!! Yes, God is good!! Congrats to her on her wonderful news!!   now as for you, what are your counts like, do you know?? have your #'s been slowly creeping up that your hem/onc decided to raise your Hydrea? When is the last time you had a phleb, i'm wondering if maybe a phleb would help bring your #'s down,  v/s you having the hydrea increased?

        My last hem/onc. visit this last wed. (and at my last visit as well) my hem/onc. considered raising my HU, but i told them (being my #'s look good) however i'm having some strange symptoms, so she thought maybe my HU should be raised. but i told her i'd rather have a phleb first if they felt i needed something, v/s raising my HU, and it seemed that the 'attending doc' told her that i didn't need neither at the moment, to have me return in 4 wks.

    Linda, how are your feet feeling? if i remember correctly... you were having problems with them.   Well, i hope your job isn't taking it too hard on you, i know it's hard for you. take care of yourself.


    Pauli, how are you feeling sweetie?? Are those awful headaches still there? and did you ever get any type of anxiety med to help you out? I'll tell ya, it truly has helped me....


    Dee, how are your legs and feet, any better yet? I'm praying for super energy to hit you so that you may be able to go outside and work on your garden, i know you love that!  hang in there Dee, you are our Rock and we look up to you.... Praying for you!


    Mimi darlin' ..... time to pop in on us here!! I'm going through Mimi blues~~~  come, come... we miss you!!!  


    Everyone, have a Beautiful weekend!!!

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

    Linda gr8 news about your daughter.But you have me stumped about the sodium counts.Please keep us posted and also are they doing a test on your kidneys.Lets hope the report was wrong.Hows the job? Are you still working alot of hours?Also do you have hypertension ?Sorry ~~too many questions.Just concerned.Please let us know what the next blood work shows.Saying prayers tata hugs =D

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

    Linda K: So happy to hear of your daughters remission!!!  I hope all goes well with the cbc on Monday too. Don't know what a high sodium count means. But hope the Dr. can figure this out without any problems.  Thinking of you,  Patti

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

    HAPPY BELATED BIRTHDAY, PAULI AND MIMI!!!  Hope you both had a great time on your special day, and that you were feeling well enough to enjoy it properly.

     

    Linda, that is great news about your daughter.  God is really good, isn't He.  By the way, the following is from www.labtestsonline.org"A high blood sodium level means you have hypernatremia and is almost always due to dehydration without enough water intake. Symptoms include dry mucous membranes, thirst, agitation, restlessness, acting irrationally, and coma or convulsions if levels rise extremely high."   I don't know if any of that applies to you, but I can see where dehydration would concentrate whatever might be in the blood, including sodium.

     

    I'm doing OK.  My doc is still having trouble getting my platelet levels evened out.  He is trying to switch me from Hydrea to Anagrelide (in consultation with the doc from MDA), but the platelets keep bouncing up and down with rather drastic changes.  I've been going in for cbc's once a week (sometimes twice), and seeing the doc briefly each time.  In the meantime, I don't feel that I've really had much of a summer vacation yet, and it's almost half over!  Where does the time go?

     

    Dee and Sarah, I agree with Patti, you two are both always thinking of others, and yet the two of you have so much to deal with.  Thank you for being so loving and giving.

     

    Neil, hope you are having a great time at Yosemite!  That is such a beautiful place.  We used to go there a lot for hiking, back in the days when I lived in SF.  Does the altitude bother you at all now?  The last time I was at a high altitude, I had a problem with the ends of my fingers feeling numb.  Weird, huh?

     

    Kathy, I'm sorry you had a reason to have to join us, but I'm glad you found us.  I'm like everyone else, I can't understand anyone with PV only having cbc's "every few months."  At the very least, I've had blood checks every month, and of course now a lot more often than that.  And yes, blood levels can change rather quickly, depending on a lot of factors.  Let us know how your father is doing.

     

    Hope all of you are having a wonderful weekend.

     

    Hugs to all,

    Pegetha

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

    Pegatha,thanks for the link.I did look it up and maybe I was dehidrated,the ac went out at work for 2 days and it was so hot.I was sure that I drank enough of water ,but who knows.

    The other reason the dr. raised my meds is because he thinks I have some blood clots in the surface vains,not drangerous just sore.He wants to be sure I don't get them in the deep vains.

          Thanks everyone for your concern.Hope everyone has a good weekGod Bless you all......LindaK

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

    Hi Everyone!!!  The forum has been so quiet I wondered where everyone is? 

    Sarah: I do hope you finally got your referral to see the ortho dr?

    Dee: Hope your counts are still going up,?

    Pauli: Hope you had a good B-day and we miss you here.

    Wee pea; Hope your trip to Amsterdam is going well?

    Mimi: Hope you too had a good B-day and we sure miss seeing you here.

    LindaK: Did the Dr ever figure out the sodium thing?

    Sorry so many questions, but it's really quiet here.

    Hope everyone is doing ok, just thinking about you all.    Patti Rainy Oregon again.

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

    Oh, my, Patti, rainy cool Oregon sounds wonderful!!  We're in a severe drought situation here, with temps over 100 degrees.  I remember griping about the cold last winter, but I'm about to change my mind.  Right now, that sounds heavenly. 

     

    I have another trip to doc today, along with more blood tests.  I'll be glad when the platelets get straightened out, and quit bouncing up and down.

     

    It has definitely been quiet on the LLS front.  Dee, is it about time to shake the sheets again?  I miss hearing from everyone.  How are you all doing?  Any recent doc's appointments or cbc's?  I know that Neil and Wee Pea have been traveling, but surely there are other folks around.  Charles, what's happening with you way down there in New Orleans?  Mimi, it seems forever since we've heard from you.  Are you OK?  Hey, everyone, let us know how you're doing.  Just a quick post with an update would be good.

     

    Hugs to all,

    Pegetha

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

    My trip to hike/climb Yosemite's Half Dome was a success.  It was 16.67 miles with 9770 feet of elevation gain and it took me  15 hr & 20 min.  I was so exhausted when I finished that I could  barely walk.  My leg muscles are soooooooooo sore, but I can almost  walk normal this morning.  After another couple of days, I should  be back to normal.

    Saturday, we were up at 4:45 am and hit the trail at 5:20.  We took      the Mist trail to the top of Vernal Falls.  The Merced river was so high that we renamed the trail the "Monsoon Trail".  The overflowing river and the thundering falls created monsoon like conditions and we were buffeted with heavy rain and wind.  By the time we got to the top of the falls, we were soaked through and through.


    Next we hiked to the top of Nevada Falls.  This part was much dryer.  By the time we hiked through Little Yosemite Valley we were pretty much dry.  Next came the climb up the subdome.  There were steps hacked out of granite most of the way, but part of it was just  finding the easiest way up the steep granite  slope.  The cables  were much harder than I had expected.  The steepest part was about a  60 degree slope and the granite was worn smooth from so many people  going up and down over the years.  


    After we finally made it to the top, we celebrated and admired the scenery.  The top is relatively flat and about a quarter of a mile across.  We explored the top and settled down for some lunch and a rest before heading down.  


    We made it down the cables OK, then started the grueling hike back down.  Our legs were sore to begin with and every step down would hurt our calves, knees and thighs.  About a third of the way down, I was running on empty.  It took a great effort to just walk slowly, but I kept putting one foot in front of the other and finally made it down.  I had stopped taking my chemo on Tuesday and I'm glad I did, because I don't think I could have made it to the top while still on the chemo.  Several times I asked myself, why in the world am I doing this?  Now that I completed it, I know why.  I'm proud that I was able to complete such a fantastic hike.  The scenery was beautiful beyond compare and I have memories that I will treasure forever.


    Neil

     

    06 25 11 HalfDome 155.jpg

     

    Here I am at the top.  I'm standing on the left.  The next picture gives perspective to where we were standing.

     

    06 25 11 HalfDome 154.jpg

    We hiked up from the valley floor below.

     

    06 25 11 HalfDome 078.jpg

    This was the cables section of the climb.

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

    All I can say is, WOW!!  I've spent time in the Yosemite area, and have even done some hiking around there.  However, even in my younger, pre-PV days, I never attempted the hike/climb to the top of Half Dome.  I'm impressed.  Congratulations on a fantastic achievement.

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

    OH MY GOODNESS!!   What a beautiful view from the top!  I haven't been to Yosemite in many years but only saw that from the bottom, as I don't do heights. Glad you had a great trip!!!

    Pegatha: I guess if we were in a drought with hot temps, I'd want some rain too. But it has only given us a few days here and there since last October with no rain, so a bit of heat and dry still sounds good to me right now.    Thanks, Patti

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

    Hi Everyone!

    Pegetha & Patti, sorry i haven't posted sooner.... I'm good! I just had an outing on Sun. that wiped me out!! I was not up to doing anything at all on Mon., just napped and dragged myself around!  gosh... how i wished for the good old days when i could just go, go, go....  Now, one day event has it's consequences! lol...   Today i just had things to catch up on.

     

    Pegetha, good link that you passed on to Linda. I didn't know of it, but now i have it saved on my favorites! thanks!   

    How are your veins holding up with your weekly cbc's?


    Neil, Congratulations on making it to the top!! What an amazing accomplishment! The picture is breathtaking! and yes... a forever lasting memory! Way to go Neil!!.......


    Our dear Dee, how are you doing? Are your feet feeling any better yet? And when is your next appt? Praying for you sweetie!


    Pauli, we haven't heard from you either... How are you feeling? I hope that you've been able to get to the doctors and that you are doing better. How is Ralph?


    wee Pea, hope you had a great time!!


    Blessings to all...........  

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

    WEE PEA OS BACK AND HAD A GGRRRREEEEAAAAAAATTTTT TIME HEE HEE HEEEEE so will catch up with you all later, as i just heading out to get my wee baby kitten with Laura and Kay.  Chat soon x

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

    Wow, Neil!

    KUDOS!!!! That was a helluva a climb! I am so proud of you. The pic taken from atop showing how far you climbed was just incredible. Yes, memories that you will have forever. And what a fantastic hike. WOW!

    I have to catch up on all the posts--been a little under the weather  and out of pocket--but I wish you all well.


    AND, my sister-n-law (Ginny) has CML. She has a true dx and is on meds now, but, I don't know which ones. She is in the very early stages of it and has a good prx.


    Love to you all,........

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

    Neil gr8 pics.I bet you were sore.I,m sure your glad you went.

    Mimi good to see you.I was going to do some sheet shaking.Hope you feel better and take care hugs to all =D

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