haemocromatosis
Posted , 4 users are following.
hi there i was told about a year ago i had it, for years i had been told i drank too much, i do binge drink about twice a month, the rest of the time i am tee total.a new doctor checked me out and found my high liver function test was due to haemocromatosis. i am terrified of needles so i have had fun time , but the staff at the hospital have been really good they know of my fears.i started every 2 weeks and have now moved on to 6-8 weeks, and i have to say that i dont watch and it is all over in no time. a glass of water and i go back to work . perhaps i have been lucky , the treatment i have had has been first rate .
1 like, 6 replies
megan36105 donswis
Posted
I would suggest refraining from binge-drinking, however. You don't want to do anything that will damage your liver more than the iron overload/previous drinking already has.
marie86421 donswis
Posted
The first and only time that I had a venesection with the standard venesection pack was horrendous. My veins are small and I made this point to the nurse and asked for a smaller needle. I was not allowed and I reluctantly went ahead with it. I was informed that it would only take 5 minutes but 45 minutes later and a huge big bump on my arm we had only got 275ml of blood out. I refused any further venesections and sought some help from my consultant. The end result is that I am venesected using a blue canula and phlebotomy bag. Takes between 15 and 20 minutes and generally I get left with a small pin prick on my arm.
Sometimes I get the odd time where it doesn't go to well and the nurse starts pulling, twisting and pushing the needle in all directions at which point I have to tell them to stop.
Incidentally, the vein that was used with the standard venesection pack won't yield any blood at all, so after one venesection that vein is now useless. I have had 60+ venesections with the blue canula and my veins appear to be holding up. Still on fortnightly with a ferritin reading of 500 down from 5000.
I hope my experience may help you in the future.
Marie
megan36105 marie86421
Posted
I have a similar problem. My veins are both small and deep down. The first time I went in for a phlebotomy it took 45 minutes for them to even find a vein (and that was with four tries of them digging into my arm which felt AWESOME). And the second time I went we found out that I need to have an IV drop going at the same time or else I'll pass out as my blood drains way too fast. I was told it should take about 20 mins as but my blood drains in under 10. So I need a bag every time.
There was also another time after multiple pricks that they couldn't get it into a vein. So they ended up using a smaller, regular IV needle, poking it into my hand, and they attached a tube, and I kid you not, I dripped blood into a jug on the floor.
marie86421 megan36105
Posted
Sometimes the nurses have used an ultrasound machine to locate the veins and gone in that way. I must be a bit of a nightmare for the nurses because if they can't get in by the second try, I start to feel a bit queezy and ask for someone else.
I have just moved house and have my first appointment with the consultant at the new hospital next week. I am dreading it. At the last hospital there were only about three of the nurses that were prepared to do my venesection. One of the nurses could never find the vein but there was one that always did. I used to hope and pray that she would be on duty when I was due in.
Are you using the standard venesection needle for your treatment now or are they using a smaller one? I am interested to know how your veins are holding up. Every time I go now, the nurses comment on how scarred the veins are becoming and it is more painful as time goes by.
megan36105 marie86421
Posted
I feel a bit bad for the nurses as well but at the same time, I don't understand why it's so hard to handle me...? I know I'm not the only person who has troubles with giving blood and having small/deep veins. Plus, I ALWAYS have to reiterate (because the nurse is generally different) that I require an IV bag. It's not a preference, it's a requirement, unless they want to deal with a passed out girl.
And the last time I went in I was told that my vein had some scarring. Well, of course it does. All of my plebotomies (except my first one and the one time it came from my hand) have all been from the same vein.
I don't quite understand, however, why I can't just go have blood drawn from my hand every few months instead (since I need them so infrequently). That needle hardly ever hurts and you can see the veins in my hand. Why does it have to be the super huge needle and why must it from from the inside of my elbow?
marie86421 megan36105
Posted
As I am a needle phobe (I was so traumatised and distressed after the first one) that my consultant requested that the nurses use a smaller needle. The smaller needle has definitely helped with my phobia and with my veins. I have had 60+ venesections now and am showing a little discolouration around the veins that have been used the most.
Interestingly, the haematology department at my old hospital don't use the standard venesection pack anymore. They use the green canula (green is the size usually used for blood tests) and a bag attached. They found that it was better for their patients and for them. They were having a lot of patients that passed out, and like yourself, had to have IV bags.
I tried the pink needle (one up from the blue and one down from the green) but I couldn't get on with that and it was making my veins very sore for days afterwards.
It might be worth asking if they could use a smaller needle. They might tell you that it takes too long, but actually, it is no longer in total time for your appointment. My last hospital used to allow an hour for a venesection. My quickest time was half an hour and longest over an hour, mainly due to the fact I had to wait for a nurse to return from lunch.