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Had 3rd treatment yesterday & was very lightheaded.

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lisa1959
lisa1959

Good Morning... ??

I had my 3rd phlebotomy yesterday afternoon.  The 1st time I walked right out of the center and was fine, the 2nd time I got almost to my car and began to feel a little lightheaded.  I sat in my car and drank some water I had there. I drove home about 15 minutes later. 

I decided that I'd drink even more water and tea before the next treatment and I did.  Plus had a sandwich just before my appointment.  I fill the blood bag very quickly.. the nurses are accustomed to it after the 1st week and they watch me closely. 

This week was different, right at the end of the phlebotomy I started getting lightheaded.  I told the nurse as she was taking the needle out of my arm.  They gave me some juice and raised my feet.  The center is set up for Chemo treatments and also do phlebotomy treatments... they are used to taking care of these things!  They took my blood pressure a couple of times and it was fine.  I stayed there another 30 minutes until I felt ok enough to drive home.  I was totally wiped out, and this morning I still feel quite weak.

The nurses are thinking it could be two things.  I bleed fast and along with the fact they take 500mls at a time?  Plus even though I had eaten and hydrated very well they may need to give me some I.V. Fluids along with the phlebotomy.

I hope to hear from them today as to what my CBC that they drew blood for shows.  Maybe they need to cut down the amount pulled every week or do the draws every 2 weeks instead of every week.

What do you think?   Lisa

1 like, 11 replies

11 Replies

  • PaulRL70
    PaulRL70 lisa1959

    Posted

    Hi Lisa

    Does feeling spaced out & like your on planet 9 ring the bell ?  I know exactly how you feel was there at the begining of this year - I felt absolutely terrible! Unit said I never drunk enough water but I drunk the Thames before hand smile - Your bosy id losing far to much fluid - what you need to do is go back to your consultant and ask to be infused with saline stright afterwards - totally eradicates the dizzyness & and makes you feel thousand times better - Ask the consultant who diagnosed you originally not the day unit staff - be it sisters Or doctors!  The consultant will know exactly what your talking about. - Trust me I've been there! look at some my previous posts and your'll see 

    Paul 

  • Katy8103
    Katy8103 lisa1959

    Posted

    Hi lisa

    I was diagnosed back in June and have been having venesection so every fortnight for the past 5 months.  

    I felt exactly like like you after the venesections so the unit reduced my blood draw from 475 ml to 330ml.  I seem to be able to tolerate this a lot better.  The reason I was feeling bad was my haemoglobin dropped to much when they were taking 475ml.  

    at my worst I was running at a haemoglobin level of 120 which is too low for me.   i felt terrible for days afterwards.  I seem to be ok at about 126+ but it will be different for everyone. 

    What at is your ferritin level? If you are not above 1000 then I would recommend asking the unit to move you to fortnightly draws and reduce the amount taken aswell.  It may take a bit longer to get your ferritin down but you have to weigh that against feeling lousy all the time. 

    Katy 

     

  • Mrs._Z
    Mrs._Z lisa1959

    Posted

    I have been having venesections since Oct. - mostly once weekly.  Each week I go I also have a ferratin and CBC before having my venesections.  They will notify me if any of my levels drop below the required amounts before going for the venesection.  Thusfar, they've never had to cancel.  I believe keeping hydrated is very important.  My ferritin level has dropped over 600 from my highest (969) after having 6 pints taken. I don't know if this is the same procedure but that weekly blood test tells them alot. 
  • sheryl37154
    sheryl37154 lisa1959

    Posted

    450-500 is the usual amount, so they could reduce it to 450.  If your level requires weekly draw, keep to that - it won't be long before it is extended.  Ask them to slow it down a little if possible - smaller canula?  Change position of your arm?

    Another female had problems because she had a very small build and needed saline i.v. while having the phlebotomy.  My feet need to be raised during the process - had a problem when one day I did not raise that part of the chair myself because I could not work out how to do it.  Now I make sure I do it.

    I started off draining very fast, now it is hard to get blood out of me - veins gone on strike.

    Katy's point about haemoglobin is important too, if it is dropping too much.  Usually we with HH do not have problems with low haemoglobin, but as you are compound heterozygote, your HH will not be so aggressive.

    Good luck - phlebotomies are better than having chemo!

     

  • chorleyboy
    chorleyboy lisa1959

    Posted

    Hi Lisa, I also bleed fast and the nurse usually has me sitting for 30 minutes afterwards just to make sure I am ok to  drive and I have fortnightly blood  phlebotomy treatments     What is your current ferritin level?    Mine fluctuates but the last twice is has reduced each time and hopefully will continue to do so, but it is still too high at 3700     Hope the lighthead feeling goes away and you have a wonderful christmas, Glyn

     

  • haircrazydaisy
    haircrazydaisy lisa1959

    Posted

    Hi Lisa,

    I had exactly the same experience - weekly venesections - week 1, I felt absolutely fine.  I drove home after about 15 minutes and smugly thought that I was one of the lucky ones!  My blood also comes out very quickly.  Week 2, I felt spaced out but my blood pressure was absolutely fine after venesection.  I went out into the waiting area and promptly passed out.  I was quickly taken back into the room where the blood was taken and fixed up to a drip.  It took about two hours for me to get back to normal - shaking uncontrollably, pale, clammy, light-headed.  I had actually drunk and eaten exactly the same as the previous week.  I then saw the haematologist who said to have venesections every two weeks.  Venesection 3 (two weeks later), I was given a saline drip at the same time as having blood taken and I drank water during the venesection and ate a Snickers bar as soon as the venesection stopped.  Again, my blood pressure was fine but I felt really dizzy.  Someone had driven me there and they also drove me home - I was totally wiped out and had to go straight to bed.  When I turned up for my venesection two weeks later, I was told that my ferritin had dropped so I didn't need the venesection and they just took blood tests.  I saw the haematologist last week who said that my ferritin is now 14 and my TS is 20% so I don't need to go back for three months.  What a relief.  The saline drip definitely helped and it was a good idea having venesections every two weeks rather than every week.   

     

    • PaulRL70
      PaulRL70 haircrazydaisy

      Posted

      This prob is all to rare - saline should be used from the offset!  Only wish someone would have told me about it -  could save me a trip up to A&E on Sat night where my BP was totally tripping and I felt very unwell!  They just sent me home saying my BP wasn't high enough to keep me in was about 200/91 then would drop to 90/85 so it was very unstable to say the least -
    • chorleyboy
      chorleyboy PaulRL70

      Posted

      I have been this morning for my fourteenth phlebotomy, and my ferritin level was up by 500 and is sitting at 4088.   Too high.   No-one can say why this happens - i guess I shall be giving blood for a long time at this rate.    Your bp at 200/91 is way too high and a drop to 90/85 does show instability and I am surprised they have not wanted to leep you under supervision.      I hope you get the lightheadedness under control soon. 
    • Mrs._Z
      Mrs._Z chorleyboy

      Posted

      I don't know if anyone has an explanation for the increase in ferritin levels.  Are you going twice weekly?  That's what my Doc wanted to do and I was under 1,000.  I've been lucky as any increase has been minimal and it has continued to go down.  I've restricted my diet to NO RED MEAT.watch my sugar intake as well as iron intake and thusfar has paid off.  I learned something new yesterday at my phelbatomy--the nurse said in order to keep hydrated you need to drink half your weight.  In other words if you weigh 200, you should be drinking 10 16 oz. bottles of water per day.  I don't know but maybe being well hydrated also may have something to do with the ferratin levels.(?)  
    • sheryl37154
      sheryl37154 Mrs._Z

      Posted

      There is such a thing as too much water too!  It has killed people who take drugs that make them want to keep drinking water and I think 10 x 16 oz per day comes under that category.  Does nothing for ferritin levels.

       

    • PaulRL70
      PaulRL70 chorleyboy

      Posted

      Well there does seem to be a number of younger people in their late 20's early 30's tripping the ferritin levels - Must confess never even heard HH Or Iron Load in laymans terms as its known. Mine was down by the end July to the target level 45 afrer weekly section - the first section was ok but by the third I really was spaced out and watching the clinic Rm spinning while having blodd taken - Very frightening! At first the sister said your not drinking enough water - rather bluntly but like I said previous I was drinking the thames so that was absolute rubbish - I recall saying on the next section after that incident I needed to have a word with the Doctor before they touched me - the registrar come round to me very young she was - said Mr L its quite normal to have that and you need to drink plenty water before hand - if you feel a bit light headed take couple paracetamol afterwards - "WRONG"! Had another really bad turn yet again but no one even noticed - OMG was like I was on a Alton Towers ride and I was sweating buckets just like I was having a heart attack - So as I work in the NHS I have access to consultants e-mails I dropped my consultant a line explained what was happening and he hit nail on the head - its because your losing far to much fluid at once its tripping your body - suggested a saline infusion straight after section - worked a treat! No more dizzyness and now I'm happy to say I donate my blood up in West London - They are vigourous with their checks before you donate but its such a worthey cause and after a year of watching pints & pints of my blood just being thrown in the clinical waste  - its nice to see it being used! So now the procedure is one mth section next Mth donate - Not sure why my ferritin goes up as I don't drink - but I did notice that I drunk a few bottles pure orange that totally tripped the ferritin just before xmas so I had to have two sections to bring it back down to 54 - I donate again on the 12th Jan
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