The Leukemia & Lymphoma Society - Fighting Blood Cancers
1 121 122 123 124 125 131 Previous Next 1,951 Replies Latest reply: Sep 24, 2011 11:13 AM by buddyrider Go to original post RSS
  • 1,830. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    hbneil Registered Users
    Currently Being Moderated

    Hello everyone,

    I had my monthly CBC this week.  HCT 43.8 & Platlets 379.  No phlebotomy for me this month!  Ferritin is still a little low at 10.1.  The weather in So Cal has been great this past week.  Rode my bike down to Dana Point along the coast last Saturday.  The ocean & scenery were beautiful.  I'm doing fine.


    Pegetha, Happy Belated Birthday wishes.

    Patti, Glad you survived your week in Portland better than last time.

    Wee P, I hope you get your computer problems straightened out soon.

    To All, I wish you all good health!


    Neil

  • 1,831. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    memy Registered Users
    Currently Being Moderated

    HELLO NEIL!

    Excellent results--way to go! Keep it up! So glad your weather has been splendid and great conditions for cycling. Always good to hear from you........ My husband is giving my bike a tune-up this week so I can start riding again. I love bike riding and it doesn't bother my back at all! Of course, it's all flat land here--don't even need to change gears! But it is always windy and I try to make my return ride going with the wind! When we lived in New Orleans there is a great riding path along Lake Ponchatrain and I used to love riding on that. Now I just ride around different neighborhoods!

    As always, great to hear from you. Best wishes to you and yours, mimi

  • 1,832. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Patti Registered Users
    Currently Being Moderated

    Hello Everyone: Thanks for all the well wishes, it means alot to know you all always have my back!  As for the Dr's not answering questions, well as you all know I've always seemed to have this problem with mine. But I think he's finally realized that I just don't go away anymore until I get the answers I may need. That has taken years to finally get him to realize that . I finally let him know in medical terms that I'm not stupid, and he's not on a pedestal just because he's a Dr either. Anyway, keep making your Doc's explain things to you as they owe us that much.

    Dee: Plts at 88? That's low as you already know. When mine went to 105 my Dr lowered my hydrea down to 500 mg's and they went back up in the 300's to low 400's. I do hope that will also help you too? I've had what I think is the Winter blues here lately? I really shouldn't complain with all the horrible weather back east, but can't help the dreary always pouring rain, high wind yuk here. 7-8 months of such little sum can really wear me down. Maybe next winter we will be somewhere warmer with a bit of sunshine? Glad this round of infusions are now done, and the swelling has just about gone away now. Well, that's all from the Oregon Coast. I think of you all daily, and hope everyone is having a decent week, Hug's to all, Patti

  • 1,833. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    DEE11 Registered Users
    Currently Being Moderated

    ANY ONE ON THE WEST COAST PLEASE HEED WARNINGS AND BE SAFE!!!!!!!!!!!!!!!!!!!!!!!!!!

  • 1,834. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    memy Registered Users
    Currently Being Moderated

    I echo what Dee said-----don't take chances---Heed the warnings--be safe and take care.

  • 1,835. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Patti Registered Users
    Currently Being Moderated

    Hello Everyone, we are ready to go if need be, but they will only be giving us about an hour to evacuate if need be. I'm going to put pontoons on this RV. I'll keep you posted. Thanks for all the love, Patti 

  • 1,836. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    DEE11 Registered Users
    Currently Being Moderated

      Patti i,m happy your ok..tired but ok.

    Neil way to go on not having the need of a phlebot.

    Mimi good to see you here...I,m going to change the word "complaining" to sharing lol.The reason why its important to share symptoms is not only to help others but to keep a record for ourselves.As far as the platlets ,i have been much lower before.One can live with platlets being as far down as 20.Not feeling well but still living.This is according to my pcp.My rbc is morphing, and has a mind of its own.Will not have any answers till i go to Dana Fabar.The feet hurting bad i know is also part of PV. In fact before dx that was one of the symptoms that was really bugging me..pain in the hands and feet.The pain in the feet has grown worse..but thank god its not constant.Its strange how some of us can have differant symptoms yet the same dx.The only thing i can come up with is that some of us are more advanced into the disease.

    Pegetha i hope your feeling better and thank god you have the weekend.I,m eager to hear about your next cbc and to see if the platlets went down.Oh ..i remember back in the year 2000 that my platlets where high.Not hct at the time and they (pcp) were no sure what was going onso i kindn of rolled with it for 7 more yrs till dx.

    Sarah how are you feeling ?You dont say much in that area

    Pauli..how is Ralph ?.Praying that you have more time to yourself.Hope Ralphs BP is lower !Hugs.

    Pauline we miss ya and cant wait till you get back to us.

    Linda..how goes th a battle and the foot pain ?Hope you get a chance to rest as well.

    Ok gotta go..To everyone else hugs and hope everyone is doing well..tata=D

  • 1,837. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    DEE11 Registered Users
    Currently Being Moderated

    P.S  the sympton that is new and bothers memost is now when i,m going up and down stairs or walking a long distance i get winded easily.DF doc warned me about this but still it bothers me not to be able to be as active as before.Hopefully when the spleen finally goes down things will get better.

    ALSO DON,T FORGET TO SPRING FORWARD;)

  • 1,838. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    Hi my friends...

    I must first start with what's so heavy on my heart at the moment.... and that's the devastation that has happened in Japan, and everywhere else the tsunami made some kind of destruction. I just am so saddened to think of all those people in Japan, i just can't even imagine all the different things people are dealing with. the loss of family members or separation from them, complete homes just washed away! It's heartbreaking.... I even wonder how people who are ill and depend on their meds (as we do...) what do they do now!? if they were left homeless....  just so much. My heart goes out to all of it and i'm just praying that help gets to them fast (i know things are in action already) however... this is huge. Patti, i also pray that you guys didn't get alot of damage over there as well? I know even our beaches here were closed down and our harbors secured just incase.

    ok,,,,,, just needed to share my feelings.  Praying for all of this and those whom were affected there, but then again, even if not affected directly.... i'm sure seeing so much of Japan washed away, has got to affect everyone there!!   God help them get through this....  i know the American Red Cross has also stepped in. Thank God.

  • 1,839. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!

    Neil, your bike ride to Dana Point sounds wonderful! That must've been a beautiful view on your biking route! boy... you must have some strong legs to pull all that off. Way to go!  and so glad that your counts are within range! yahoo!!   and how are your platelets?  keep doing whatever you're doing!


    Mimi, you bike riding through your lovely town sounds wonderful!!   wished i lived near by and could join you! don't know how far i could go.... but it would be nice to feel the breeze on the face!  how has your back been treating you lately? i'll be praying for good counts on your visit for Mon. and that they can access the vein on the first try!


    Pegetha, you are in my prayers, i hope that you've had a little relief   and how did your chain saw deal go??  I agree with Mimi... you must be bionic! I surely admire you for that!

     

    Patti, i'm happy to hear that you are healing well from the infusions you had. And i'm so thankful to hear that you and hubby and Max are ok. hang in there.... better weather will be on it's way soon!   or at least it should be!


    Hey Dee, so sorry to hear you are still dealing with so much pain, and now the feet! I know that must be so hard for you with all the hard work you always do...

    I just pray that DF doc's will be able to figure something out for you!! You are so overdo on a break! and so is Pegetha.....  It saddens me to know that you both are always dealing with so many hard things at once. Praying for the both of you    and as for the doc's saying that one can live with platelets as low as 20!!! well, _____ !!  yeah.... what kind of living!??  would they want to live with platelets as low as 20!!??  think not!!   something has got to be done before they reach that level.....  at least that's my thinking. I mean... how does one feel when the platelets are that low??

    Please take care of yourself, don't do more than you know you should (then the consequences kick in..) be good to yourself! okey dokey? you too Pegetha!


    Pauli, how are you doing? I'm worried about you and Ralph as well.... drop a line when you get the time.


    Denise, i hope all is well with you and your hubby? Hope you are feeling well and have gotten to spend time with your family, hope they've gotten visits?


    wee Pea.... WE REALLY MISS YOU!!  Why can't they fix the problem!!??  can't imagine how you must feel frustrated over it..... Well, we really miss you and your beautiful witty charm! much going out to you!! .....


    Everyone...... be good to yourselfs and be Blessed!!!   have a Fantabulous day!!!

  • 1,840. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    SAKI Registered Users
    Currently Being Moderated

    Hi everyone! Just checking in. All is well with me. Just the usual fatigue. The low platelets are an interesting one. My daughter went thru ITP about a year and a half ago and all in all she was just fine with a platelet count below 20. Basically for her it meant she bruised way too easily, bouts of petechia, and a huge risk for uncontrolled bleeding. We had to restrict her activity level for a while and she had an IVIG treatment to boost her immune system. She bounced back pretty quickly. For her it was all over in about 4 months. But I have a friend whose daughter has the same conditiin and she has just passed the 6 month mark with no improvement. So for their family it has been pretty rough having a 4 year old who isn't able to play at parks, participate in gymnastics or ballet, or any other active endeavor where head injury or other could lead to a cut and uncontrollable bleeding and an emergency trip to the er. A minor cut (paper cut) can bleed off and on for days for the poor girl. She doesn't really seem to have a problem functionning with the low platelets but she does have the boundless energy of a preschooler. It is much harder on her family. Her counts have been holding in the low 20's for a few weeks now.

  • 1,841. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    DEE11 Registered Users
    Currently Being Moderated

    Saki what is the girls condition ?Or are they treating symptoms?The energy she has ..can i borrow some lol.My spleen is large and staying there ,so the phlebots really did,nt reduce it.Cant imagine it getting any bigger without popping.Eating is a real challenge,painful at times.But i hoping my appt on 4/4 wih the local ONC will help plus Dana Fabar in May.

    Pauli how are you ?????? and how is Ralph ??

    Hope everyone has time to post and update how they feel.Things have been too quiet..so i,m shaking the sheets to wake all of you up.Hugs and coffee tata=D

  • 1,842. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    SAKI Registered Users
    Currently Being Moderated

    Idiopathic thrombocytopenic purpura (ITP) is the condition of having a low platelet count (thrombocytopenia) of no known cause … She had a Rhogram treatment last fall and steroids due to a bad reaction. It's been a wait & see no treatment approach for months now. Her mom may have treatments done every few months just so she can experience some normalcy from time to time- family vacations etc. The little one also seems to be fructose intolerant- what a difficult condition for anyone to have- so my friend has become a food nazi ever cognizant of exactly what is in foods her daughter eats be it natural or processed.  We believe our daughters case of itp was triggered by getting the flu shot. Boy did we get an education in platelets back in the fall of 2009 on both ends of the spectrum!!

  • 1,843. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!

    ok Dee... i felt that wind blowing from your shaking the sheets all the way down here to Cali!


    Saki, so sorry to hear about your friends lil' girl...  It really saddens me especially when there are children involved with med. problems. I will be praying for her and her family.  


    Dee, i sure wished we could all pitch in and give ya a lil' bit of our energy (not that we have alot...) but, enough to share if we could!  Wished that spleen of yours would start to respond to the changes in your HU intake, i pray that the DF doc's will be able to come up with something for you!


    Pauline, we surley miss you here!!  know that we are thinking of you! and glad to know that things are improving for you!


    I'm still with leg pain (think it's due to the miniscus tear on my knee?) the pain is from the can go from the thigh area all the way down my leg, but usually most painful in the side calf area, and now the other leg is starting to hurt also. think it's that i'm putting more pressure (weight) on that leg now.

    I'm also getting almost daily headaches again, and still have the blood issue going on whenever from my nose (not a nosebleed) nonetheless... bleeding.

    oh yeah,... more battles with the ins. i have now, have to go reapply again (due to their fault)! fun, fun, fun!!!!  for all of us always!!  Not!!!  arrrgg!!!


    However...... It's a BEAUTIFUL DAY out today!!!!!  Hope all of you back east and up north are getting a break from the soggy rain and cold!   much love going out to all of you..... and i keep you in my prayers   take care! and God Bless you All........

  • 1,844. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    memy Registered Users
    Currently Being Moderated


    HEY ALL!      HAPPY ST. PATRICK'S DAY !!!  CHRIS AND I MET ON ST PATRICK'S DAY SOME 17 YEARS AGO! HEE HAW !!

    PEGETHA, as always, wishing you are faring better. SARAH: Hoping your leg clears up soon and headaches go away. DEE: As always, wishing, hoping and praying for you to improve. NEIL: Hope you continue to fare well and keep on riding. You inspire us!....Patti: Glad that you escaped the tsunami damage and glad it is over with for you. Of course, my fervent prayers are for Japan to heal as quickly as possibly and pray for containment on the nuclear reactor. Japan is a wealthy country and has the best minds working on the crisis and hopefully it will be controlled sooner than later. My deepest sympathies for the Japanese. LINKA K: Goodness--so much going on with in your circle of friends. I hate when children are affected by all these mysterious 'conditions' and I wish you and yours well. I didn't know what 'IVIG' treatment, but glad it worked well for your daughter (if I read the post properly). My best to you and yours.....PAULI AND RALPH: Well, dear, I am hoping your headaches are not bothering you now and you are faring well, as well goes for Ralph.....DENISE: Thinking about you and hoping you are faring well. AND WEE P: a shout out to you full of love and compassion and CAN'T WAIT for you  to be able to post soon. I can speak for Pauline in that she is waiting  for the people to come to her house to strengthen her signal (for lack  of better word).

    LINDA FOWLER: Hope you are faring well. drop us a line some time. I know you are very busy at work. best wishes.

    AND TO EVERYBODY ELSE: We are always wishing you well.

                 

           AGAIN:     HAPPY ST. PATRICK'S DAY TO ALL