The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 780. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
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    Gosh all you guys want me to be your nurse, i am flattered lol... i shall come to america and start up my own care home for you to grow grey and maturer with me lol    that would be much fun eh!!   

    Ok i have my cbc today and my counts were ok i guess, my platelets were up from 300 to 473.  Htc 41.7%, 42% last time. No phleb, so that was good.  BUT i have now been increased to 1000mg hydrea to 5 times a week from 4 times a week and the 500mg down to 2 times a week.  so i was not too happy in having to take an increased dose again.  i go back next week, as i am worried incase my platelets take a plumit downwards again.  she also want me to see a clinical psychologist, due to my mental health! i am not sure if i need to see one so high up in the psychiatric status, but seemingly it takes for ever to get an appointment, so i may cancel if i still dont feel too good.  I told her,physically i feel much better, but mentally i dont feel too great and i am having a tough time excepting all thats happening since june last year. i know i am still early in my diagnosis, but i just want all to settle in my head .   i do have a confession to make to you guys though - i reduced my anti depressents myself about 6-8 weeks ago and i am not sure if i should have, due to the fact i hate my new doctors, i have not been to get there advice on the anti depressants...and i thinking now i have made the wrong decision. I am sorry i did not mention that earlier, as i know it was wrong for me to do that on my own, but i thought i was doing well..!!! i thought wrong HUH!!..  i was talking to a close friend of mine today (mental health nurse) and she advised me to go back upto my usual dose and give it 6 weeks and see how i am.  she has ordered me also to go and see my doctor, but a different one, from the 2 that i have already seen, as i did not like them.

    i had a stressful day today and again was in tears, and Patti i want to thankyou again for allowing me to talk to you   i am so sorry that you have to wait another  2 and a half weeks till you get your knee sorted out. but all will be fine in time eh

    So its chin up and be strong and battle on.  i shall try and keep a happy post in the mist of all this as it helps to lift all our moods eh..laughter best medicine    wee p

  • 781. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    pegetha Registered Users
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    Sarah, Omigosh, you've become the sheriff!  You're right, though, lots of folks (including me) haven't been posting much lately.  It's just that, when I get home from school, I can barely function and don't usually feel like posting.  I do read and keep up with everyone, though.

     

    I went for my monthly cbc yesterday, and had to have a phleb.  Hct was 46.1.  Not really high, but doc made me do it!  Only problem, my one and only accessible vein, in my right arm, is getting so hard that the techs are having trouble accessing it.  Yesterday, my tech told me I might soon have to consider a picc line.  I dread that day, needless to say.  I know you've had at least one, Emily.  Tell me about it, if you don't mind.

     

    Another bit of information that all of you might find interesting or probably need to know about.  I've been having a problem with blood in the urine, and I think my hem/onc thought I had bladder or kidney cancer.  He sent me to a urologist for a bunch of tests, including a cystoscopy.  Everything was OK.  So then how do you explain the blood in the urine (called hematura), I asked him.  He then explained to me that, since the kidneys filter the blood, and since people with MPD's have to process a lot more red blood cells through their kidneys, that leakage of some blood into the urine stream is fairly common.

     

    So, if you ever have the problem, obviously it needs to be checked out, but be comforted by the fact that it could be nothing more than "leakage."  I never thought I would be so happy to be told that I leaked! 

     

    OK, is that enough of a post, Sarah?  HeeHee.  Just kidding.

     

    Later . . .

    Pegetha

     

    Oh, one other funny thing.  When I have to have a phleb, I always make sure I get the same guy.  He's really good, usually hits the vein on first try, and never hurts me.  (Not like some of them, who can almost reduce me to tears.)  Anyway, I was telling him yesterday that I always like to have him do the phleb, and why.  He grinned, and said, "I have a confession to make.  You were my very first phlebotomy, and I sort of learned on you."  !!!  That blew me away, since he is always so good with the phlebs.  Guess he just has the knack for it.

  • 782. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Pauli Registered Users
    Currently Being Moderated

    Patti, I am sorry that you have to wait 2 1/2 weeks but here that is really quick!!!  Sorry if I sounded insensitive!!  Hold on girl!  Soon you will be good as new!

    Pauline, sorry that they are upping your dose but I guess if that is what it takes to stabilize you,????  It is so hard isn't it, to know what to do.  I hate taking meds too and the lesser the dosage the better but sometimes it doesn't work!  I hope that you will get your anti-depressant stabilized, too.  Maybe that was part of the reason for the "downer".  Hang in there girl.  You are going to get back to your chipper self!  I know it!  you are a fighter!

     

    Pegetha, good to hear from you again.  And so glad to hear that the urine problem wasn't serious!!!  I have been praying for you!  Having to have the phleb I am glad you got the "good" guy!  Kind of interesting that he was learning on you!!!  Like you said, he really must have a knack for it.  Sometimes even just drawing blood, one nurse is so good and the next doesn't seem to know how to do it.  I guess when we have to go so often we can compare one from another more! 

    Must get to bed, night all!

    with love

    Pauli

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

    Pauline....decreasing you antidepressants dose will make you more weepy.When my bp shot up and i had to slowly go off the cymbalta i could feel the changes.Thank god i was,nt on it that long.So please if you know you felt better on a full dose stay on it.I,m a great one myself for monkeying around with dosage.But if you decreased it because you felt good that only means it was working well for you.Emily stated that HU decreases the seritonin level.so it all makes sense.The differant sleeping habits etc.

    Well i have a small issue with skin probs..its small bruises on my thigh and in the middle is the redspots.But there not smooth like the petechia i have anywhere else.Its alsmot like it has a small whole in the middle.I took a picture..which was hard trying to get the right light and snapping the left outer side of my thigh.If anyone saw me it would of looked so strange...twisted with leg on sink and a camera in hand...lol I,m not posting the pic but if anyone else has the same issue i can email it.What a GAM !!!!!!!

    Pauli i,m eager for your appt. May 4th....I,ll feel better once you see your doc.

    Sarah.. my sheriff side kick lol.. thank you and i pray all your hard work and stress pays off and you can start to relax.

    Mimi get your butt outa the pool for pete sake and drop us a line lol

    Pegetha i,m glad the doc explained to you about blood in the urine...i have had blood show also off and on... and after more tests it went away on its own...It goes to show you there is still many docs that do not know about PV /Et....I had seen a urologist and 2 docs and not one mentioned...that this can happen ~~~ because they did,nt know..So this is the reason for this forum to keep going besides the great relationships that are so special to me.

    Ok gotta go before Sarah tells em i,m getting too DEEP lol..COFFEE IS ON.....PULL UP A CHAIR. HUGS 2 EVRY 1.......TATA=D

    Patti... another hurry up and wait.We will be waiting with you!!!!I,ll be glad when your up and about and this is all behind you....hang in there!!

    Linda.B and Linda...please drop in...we miss you.

    Colleen how are you !!!!!!Hope you can stop your busy life wth the kids and all and let us know how your doing...To everyone else that we have,nt heard from I hope your well and pray you,ll stop by

    Sorry for the long post....my bad

  • 784. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    daisym Registered Users
    Currently Being Moderated

    Hi Dee

    You may or may not remember me.  I visited the forum last year for a short while but other stuff in life took over and I lost touch.  Since my diagnosis last year, things have progressed slightly.  Im now on Hydrea (600mg a week), have been since Jaunuary and my platelet count is still 541. Hb 14.9, HCT 0.46 Neuts 5.84.

    Been having headaches that last for days and bruise very easily.  Tired all the tiem but that maybe because I have a 20 month ld little boy !  Very confused by my doctor as she says they cannot make up their minds whether its ET or iron deficient PV !  Imagine how confusing that is for me !

    Looking to you guys for some help/guidance with how im feeling... feel quite depressed too many days.

    HELP !!???

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

    Hey Daisy glad you made it back...you sound like Patti whos has had confusing ET/PV...DX.Maybe she will chime in.Yes fatigue is the common war cry...there are others here that i,m sure will meet and greet you..To have a young child and the fatigue is a daily struggle....my young child is my husband lol....I forgot where are you located?...

    Also 600 mg hydrea a week sounds like an odd dosage....??? But here is so much i do not know.And when i learn ..i quickly forget lOL

    Depression has been the hot topic lately..we were just discussing the hydrea lowering the seritonin...maybe your doc could prescribe a mild antidepressant.Please vent ,cry laugh or jump up and down.Believe me we all know where your coming from...Hugs and i,m thrilled your back tata for now

  • 786. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    daisym Registered Users
    Currently Being Moderated

    Hi Dee

    So nice to hear from you.

    Dont know what im on about.... my dosage is 12 500mg tablets a week

    I live in the UK and there really arent many if any current support groups or anything like this where you can share stories etc, so im glad that i have found you again.

    Can hydrea do that to your seritonin levels ?  I didnt know that.  I will definately speak to my doctor about that. Not that i want to take anymore drugs, but whatever helps in the short term eh ?!

    I was wondering about the likelihood of this turning into something more sinister.  That is what i worry about the most.  I am only 37 and am worried that due to my age, the chances increase of myleofibrosis or worse. Does anyone know ?

    Already had a PE 18 months ago, which was when my counts were investigated further.  Before then, my platelet counts have been high for years but my doctor never investigated it fully.

    Still, recognise a lot of names from before so be good to be able to communicate with you all again maybe.

    Best wishes to you all

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

    Hey there Daisy

     

    I think there might have been a slight confusion regarding what I said about seratonin and HU and platelets. The Hydrea itself isn't what affects the seratonin leve. Platelets carry serotonin in them. And my theory is that since most of us have a high level of platelets in our systems, that perhaps it could be a cause for our emotional fluctuation. The big thing Hydrea directly affects most, besides flushing out excess levels of blood parts of course, is the size of red cells. Which would increase your MCV.

     

    Hope that helps

  • 788. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    daisym Registered Users
    Currently Being Moderated

    Hi Emily

    Nice to hear from you

    That all makes total perfect sense !! ...... thank you

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

    Daisy my platlets were elevated for years also..They(pcp) made no big deal but she did wonder about it especially were my left side sounded like music when she listened to it lol.As she did a few scans back then and noted an  enlarged aorta....and a few other things.. she had to move to california...So as i went on i just forgot about it and figured if the new doc does,nt make a fuss i,m not going to worry about it.Then some yrs later i was dx,d with PV.All i know is that Hydrea SEEMS to play on emotions.Maybe Emily is right because its a roller coaster ride with the platlets.But all that matters is that it happens...I,m hoping you can talk to your doc. in a comfortable fashion.

    Have to hang around.. contractors are here to replace ..windows that broke doing the bad storm.Wish i could be more help.Take care tata =D

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

    I never got around to editing my post the other night. I was exhausted, and have had a pretty nasty headache for a couple days now, so reading/typing weren't top priorities unfortunately So here I go. .

     

    Dee, I've been having lots of bruising on my thighs and calves too lately. Don't know why either. When I find one, I check furniture, and corners to see if they're the right height to be the cuplrit. . .but usually they're not I don't have the red spots though. . that sounds almost like a bite of some kind. . been out in the garden lately? Perhaps some ants or some other little critters nibblin on ya?

     

    Peg, I'm sorry to hear you might have to get a PICC line Here is generally what to expect with one though: First they'll numb you up real good, lydacaine as much as they can. Then with the help of an ultrasound they will bore a guide tube under the muscle into the brachial(i think) vein which is in the upper arm. Sometimes they go for a different spot, but that seems to be the more common location. after they are sure the guide is in properly, they will start to thread in the catheter. When they were doing this to me, my heart skipped a couple of beats, they said it was just from the "surprise" to the vein. Then they continue to guide the cather until it's in the proper location. They will do an x-ray to make sure it's where it belongs. Honestly, it was uncomfortable for a couple days. My chest hurt, my shoulder felt funny. . but by day 2 or 3 it was fine. Mine was a double lumen type. If they are just going to use it for drawing blood and doing phlebs, they might use a single though. Not sure. The biggest inconvenience with a PICC is the showering issue. Picc lines need ot be kept dry. Saran wrap became a regular shower accessory for me. That was a real pain. Also the bandage has to be done in a sterile change, which tends to require a nurse's assistance. It's very difficult to do a sterile change on your own, so they'll probably just do it for you at the hospital when you go in for your visits, presuming they're frequent enough. Otherwise they might send a home care nurse, or teach a family member to do it, though that's unlikely. I'm surpsied they didn't lean more towards a port instead. A port is more permanant, but also easier to deal with (from what my doc told me, when he said I might need one if pheresis got more frequent). But who knows. . .if you need any supplies though, i've got plenty. I have sterile saline left, heprin, alcohol wipes, extra lumens, and caps for line changes, extra steril change kits, you name it, i've got it LOL let me know if I can hook you up haha

     

    Pauline, are you feeling alright after reducing your antidepressants? the probelm with things like that is they tend to be cumulative. So for the first few days you feel alright, but then it starts to wear out of your system. How much did you change your dose?

     

    Patti, I'm sorry you're having knee surgery. At least the pain will be fixed   Is it going to be orthroscopic?

     

    Pauli, how's the head feeling lately? And the leg? Hope the pain is lessening. As far as the counts. . honestly, I don't know what they are right now. Last check they were 1.5/1.6million. Doc decided he wants to wait before I get another CBC until my appointment in July. He seems to be extremely apathetic towards me.

     

    Sarah, darling, how are you feeling lately? Emotional rollercoaster settled down, I hope?

     

    Saki, how is everything?

     

    Joanie, haven't heard from you in a while, how's everything been going with your husband?

     

    Colleen, haven't heard from ya in a while, how's everything going?

     

    LK, Linda F, Anne, Charles, Denise everyone, hope things are going well. Check in whenever you get a chance. We love to hear from you

     

    So I was just the subject of a company wide rapid-fire e-mail response. . . it's pretty hilarious, and heartening at the same time I suppose.

     

    "Sometime in May we will conduct a fire drill, same as last year; we will do it on a nice day!  Everyone will be expected to vacate the bldg (except for the receptionist) and all areas will be observed for compliance...Remember to shut your door (if you have one) as you exit. Thanks, GM"

    That e-mail set off at least 80 in response saying things like "Why should Emily have to stay behind" and "we need a 'save the receptionist' petition" and so on. . .it was hilarious. . . at least I know my coworkers don't want me to go down with the ship LOL
    The weight loss is going well. I haven't weighed in yet this week. But a couple pairs of jeans I own are too big again which is good to see!! I'm really enjoying the work out routine I've got going. And I have a lunchtime walk-buddy. one of the guys I work with goes with me to the park and we both walk on our lunch breaks together. It's nice not having to go alone
    Since Mike is back to working at an auto shop, he is really lacking in energy at the end of the day. It's tough to get him to walk with me after work. He's just in the mood to relax. I can't say that I blame him though. He works 7:30am-6pm. long day. So I don't push him. I just hope he's getting the activity he needs to help him stick with the program.
    OK, I've stretched this as long as I can for now, got to concentrate on work now. I'll talk to you all after while!!
    ((((everyone))))
    Emily
  • 791. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone! It's wonderful to see all the posts!  

    Pauline, i'm so glad to hear that you are continuing to feel better! It takes time my dear... don't be hard on yourself ,, we all go through it at times. And i agree that when we are forced to focus on other things, it takes our minds to a different level.  Hang in there! you're doing good, and i'm proud of you!!


    Dee... you are too kind!   Thank you (and you others) who have been giving me all the encouragement i've needed as i've been dealing with much unpleasant paper stuff. Your kind words and prayers have helped tremendously!!  I'm so thankful that 'One' thing is behind us now! Not quite behind... but at least we've done our part... now we wait and pray for the best results on the appeal. I know God is good!!


    Dee, i'm so confused with these doctors!!! Yours right now to be exact! Is that their famous line... we'll keep an eye on it and see!!! arggg!! How the ____ long do they want to wait and see!! good grief!!   It must be very frustrating sitting there listening to him say these things...  I'm just so thankful that you are one smart cookie, and know how to handle yourmeds to try and help, but not affect the other...  I'm so lost on all of this... But,... one thing i can do and will continue to do is,  Pray!! I do and will continue to pray for you and your doctors!    and i got confused, i thought you got your shot yesterday? but i guess it's Friday. I will pray it goes well for you!


    Mimi,... X told me that your area had a bad Tornado??  I'm praying for you and hope all is well at your home. Please let us know how you're doing. I really miss you! and i know the others do to.



    will go read the rest of the post now..............   Take Care my friends!!

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

    Pauli, I'm Soooo happy to hear that you have a doc's appt. on the 4th!!  I'm so glad that you'll be get a cbc and get checked out! I'm glad to hear that the headaches have gotten better, that's wonderful!   As for the garlic deal.... uhmm... i don't know anything about that, so i won't pretend to! lol...

    you're a sweetie Pauli... and i'm praying your doc will do you justice come the 4th!


    Patti, i'm sorry to hear that they found some tears on your knee, (but at the same time.... good thing they found them!) huh? Sorry you have to go through the surgery Patti, i will be praying for you and for a speedy recovery!!!   will also pray for the arthiritus, that can be very painful.  Hang in there! and try to hopple around too much!   take it nice and slow ~~~~ if possible!    that rain doesn't sound fun..... i'll do the 'Stop-Rain Dance!!! for you guys!'


    Pauline, i'm lil' confused as to why your onc. choose to up your hydrea when your counts are so good?   ohhh... i just went back to recheck your post, i see your platelets went up some (still good) but i guess he doesn't want them to creep up more.

    Pauline, don't ever feel bad about what you do... or don't share with us. We all have to listen to our own hearts, and we will know when or what to share. You are going through alot of changes in your life, and it all takes time. You are trying to make all the Best decisions for yourself! and I praise you for that!! You are doing good Pauline! It wouldn't hurt to see the doctor, you will know if you should or not when the time comes.  As for taking or not taking the anit-dep. meds.... Listen to your body and mind. You will know it you need it.

    I myself stopped taking a water pill which i'd been on for like 29 yrs., because i was having horrible muscle spasms in different body areas.  But... i did it gradually and monitored my bp to make sure i was ok.   We all know our own bodies best.... Listen to it... I will be praying for you. I know these are all such hard decisions to make.  Hang in there


    Pegetha..... lol.... Sheriff? Me? no way!! that's good ole' Dee!!   just decided to try and help out a bit.

    but i understand it's hard for some of us to post as often as we'd like,... i myself don't even own a pc! lol... so i hop on when i get a chance and can. But... a lil' from everyone when they can, will make a difference!    Pegetha, sorry to hear that you needed a phleb and are having problems with the veins... I know that was since a long time ago for you. And OMG Pegetha..... Hurray for you leaking!!!!   what a scare you went through! I'm Sooo glad to hear that it's all ok!!  and i will be praying for you if you need to get a picc, i hope they can work around it though.

    Oh my goodness, your phlebotomist statement is hilarious!!! LOL..you were his good lil' guine-pig!   I guess you guys were meant for each other! LOL...


    and yes........... Great posting!!!!!   Loveeee it!!!     Thanks Everyone!!!!


    I've got to go............ won't be able to finish reading the rest. sorry. but i've got to run....

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

    Ok......... i really have to Runnnn out of here!!!  Just want to tell you all............ I LUV U GUYS!!!!!   YOU ARE ALL AWESOME!!!!


    DaisyM, i will properly introduce myself later, I'm Sarah and so glad you are here!!


    Emily, great to hear you will be doing another LTN walk!!!  M.A.D.??? for sure?  way to go!! proud of you!


    p.s.

    Oh yeah Dee.............. 'Deep!'    Loveeee it!!!    

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

    first post was slow ..had to redo

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