Drain blood via a syringe during venesection

Sure you have yours done local to me to   Mine takes approx hour thats them taking your BP before & after and prep for the candula. Although now I have saline to but all in all bout a hour half. The Matron did it once and was happy the speed on which the blood was flowing out and just allowed it to free flow - However its being done via syringe lot more now which I must confess does make u feel a little nauseouss to say the least

Hi Marie 

Lets put it this way Thames & drink Doesn't make no odds on how much you drink at all that was their initial reaction but its absolutely nothing to do with this although I do think it helps to hydrate yourself to plump up your veins. Mind you I was weeeeing so much on the section day that I thought about getting some huggies at one stage  its no joke when your on a train  in London and your busting for a wee. Personally speaking I think its the trained eye & hand and caring nature that does the job and gets the blood free flowing - Had junior nurse do my section and I must confess not even a mark on my arm and absolutely no syringe at all. Very careful and up to the job! Although she did say she wasn't suppose to be putting the candula in she did it better than the two sisters who run the ward. The Matron was fantastic to! very gd at her job. Its cert a real eye opener sitting on a unit.  The other thing is bruiseing my veins are in pretty gd shape but some nurses will stick the needle in on the outer part of the forearm which actually makes me feel really unwell - Did have to say the other wk enoughs enough try the other arm as she wasn't hitting oil boy have I got a bruise there now as she was wiggling the needle about for ever it seemed - I alternate my arms each Wk norm have no prob

Hi Paul

My sister has her venesections in London.  Which hospital do you attend?  My sister goes to UCLH.

She has lots if problems with different nurses, some better than others and she gets really stressed if she is called by a nurse that she has had a bad time with.  She now asks to wait for another nurse with whom she feels comfortable with.  They are quite good and allow her to do so.

Looking at Sheryl's post using Aspirin, my sister does the same.  She takes Aspirin the night before and the morning of the venesection.  She swears by it.  She is also a needle phobe like me and has a canula like myself. 

Although she has not had as many venesections as I have had, her veins are not fairing as well as mine.  They are now taking the blood from the under side of her forearm.  Ouch! 

Both my sister and I have had the situation where the nurse misses the vein and then twists and pulls the needle, that really hurts and I have to tell them to stop as it makes me feel quite queasy and it feels like I am going to pass out.  I find that sometimes they think they are in as they see blood in the tube only for the blood to stop running as they have passed right through the vein.  That's when I get the nasty bruising.

Interesting that the nurses where you attend say that it makes no odds on how much you drink.  I am asked every time I go whether I have had lots to drink.

Best wishes

Marie

Hi Marie

Have mine done at Bartshealth - which is where I work to   I know UCLH well having worked out in cancer services there 

Well must confess some of things you say I have deffo encountered. Most nurses are rather gd but you always get the odd one Or two who can be a little harsh shall we say. I've had that where they put the needle in and can't hit vein so wiggly it about and yes your absolutely right it does make you feel like your going to pass out - noticed I go cold to. I did have to say the other Wk enoughs enough can you try the left arm. but I have a big bruise on the underside of the fore arm for the want of her trying. When they insert it in this area it really does make me go cold. 

Asprin thins the blood so I guess  maybe it as some benefit along the way. 

Until late Dec last year I had never even heard of Iron Overload let alone Haemochromatosis. But thinking bout it now I lost my dad in his early 70's and from what I read the iron builds up in the organs until you have organ failure whether that be liver, heart etc so having lost a reasonably fit dad its highly poss he might of had this. As it was a heart attack that took him. Suppose yes moan about all the venesections but end day if it saves ya then its worth it 

Since telling a few people about this I hear they have gone and got their self checked out as iron content seems to be over looked by GP's in blood test results - Mine was 800 ML in 2013 but wasn't picked up on by my GP  Was only that I kept getting reoccuring mouth ulcers that my GP thought I was lacking Vitamin B that it got highlighted my iron content was high hence being refered last Dec  

They did initially think I wasn't drinking enough water prior to section but like I say I was drinking gallons of the stuff but still felt very unwell - indeed I did pass out on the unit but don't think they noticed it as I was laying down but just remember the room spinning and feeling like I was in another world - seemed like ages but prob was minutes until I come round from it - horrible feeling as you totally lose control!  

Paul                 

Hi Paul

Like you, I had never heard of haemochromatosis before being diagnosed.  My diagnosis took a long time and by the time I was diagnosed with ferroportin disease (haemachromatosis type 4) my ferritin was 5000.  It has taken three and a half years to get down to my target of 200 and an now in maintenance phase.

I was horrified at first when I found out what the treatment was, needles and blood and not very good with either, but it didn't take long to realise that there are a lot more people worse off than me.  I am fairly relaxed now with the thought of lifelong venesections as long as I can continue with the smaller needle. 

My sister and I have no idea which parent we have inherited the gene from as both were dead when we were diagnosed.  My mother died at the age of 47 from a heart attack and my father at the age of 72 from lung cancer.  He was quite fit and did not have many health problems but he was a smoker, so I guess the cigarettes got him in the end and not haemochromatosis.  On my mother's side, her father died at the age of 67 from a stroke and his brother at the age of 55 from a heart attack.  The heart attack was a big shock as he had cycled everywhere and was a very fit person.  From this family medical history we are assuming we have inherited the gene from our mother's side.  We have notified all of our relatives and left it up to them to get tested.  So far we have not heard of any other member in our family with it.

Have you been in the new cancer centre at UCLH?  It is much improved on the old building and a much better place to wait for your appointment.

I am lucky that I have not felt unwell from the actual venesection but if I overdo it on the following day I get a bit dizzy, so I try not to have too much going on for a couple of days afterwards. 

Best wishes

Marie

Hi Marie

Must confess having what resembles a darning needle stuck in your arm first thing on a Monday morn isn't the best way to start your week off

Tend to just want to get it out of the way so always hop for a Monday slot. Mind you the clinic is very busy so I have to book way in advance

What’s got me wondering about all this iron overload business is it was a young locum who picked up on this initially - My own GP seemed somewhat vague about it all and seemed to think no one in the practice had ever been diagnosed with this before. Had me thinking is this a new thing within the medical world because they are looking more at our genetics now and how they affect us

Sure I worked across the Rd to the new cancer unit – Is it on Huntley St ? Cannot keep up with all the new builds being erected across the capital particularly in the NHS. I know they have just relocated the London Chest to Barts hospitals main site

I did get told by the consultant that the type of Haemochromatosis I have was inherited from both parents so each parent would be a carrier of one of the genes and that’s resulted in me ending up with it. My mum had hers tested and her content is 100 and no trace of it so I reckon my dad prob had both genes . Although his not around to be tested but its highly poss he did have it but having said that he did donate blood when he was younger so I cannot see them letting him do this if he was a carrier

 

Other thing is I see my blood being binned each Wk following section yet there’s other people sitting on the unit opposite me having infusion for low iron – I did ask about becoming a donor  but apparently they are very strict on donating blood now and it can take up to 2 years to be accepted on the register. This poss could be because I am a carrier but the consultant seemed to think it was a simple process to become a donor but the units job was just to get my levels done to a acceptable level

 

Paul

 

PS. Any new people reading my convo’s who have just been diagnosed don’t blow a gasket I’m sure each individual is totally different in what treatment they undergo and their reaction to it – I know reading up via the net when your just been diagnosed with something is something we all do – not always wise as people do differ

Hi Paul

Yes, it is on Huntley Street. 

My GP didn't think of testing my ferritin when I kept going back to him.  My overload was eventually picked up by having an MRI scan for something completely unrelated.  It was at that point that I got referred to a haematologist.  It took another two years after that because I didn't have the classic hereditary haemochromatosis.  At first I was diagnosed with hyperferritinaemia, then hyperferritinaemia cataract syndrome and eventually ferroportin disease after a genetic test to check for a mutation in the ferroportin gene.  All the while my ferritin was climbing and no one could understand why, especially as I hadn't inherited two copies of the HH gene.

It was good to finally get a diagnosis and start the treatment to get the ferritin down.

Having a first thing in the morning slot is no good for me.  I prefer an afternoon session which gives me time to drink lots of water.  As you say in your ps note, we are all different and anyone following has to find what suits them.  I have found all the contributors to this forum very helpful and I hope we are being of some help.

Best wishes

Marie

Hi Marie

Had feeling was Huntley St - I use to work in cancer research across the Rd

Cert have been through the mill then - No fun for someone who doesn't like needles! Least your on the right track now

Must confess drinking lots water is a real pain - I drink water throughout the day normally but on appointment day its harder as my slot is at 10 am each Wk so guzzling water down me before hand is a bit of a task

Oh its always gd to talk to people in the same boat as you I find - compare notes

Paul

 

It was your mother. The iron deposits in the heart , liver and pancreas. .it also causes leukemia. .. if you have high binding cells.

Hi Paul, I have been dealing with HH for 25 years now and not new to it, and have been educating other people about it for many years now.  I seem to be reading a problem in your interpretation of your heritage.  Could be wrong but it is just how it comes across.

For you to have Hereditary Haemochromatosis, as your doc says both your parents had to be carriers or more.  Therefore your mum had to at least be a carrier.  It sounds like she only had a ferritin iron test done (100) but dr cannot tell from that whether she is a carrier or not.  She has to have a genetic test to identify it.

Your dad would have to be a carrier at least too or have two genes and therefore have HH.  He would have been able to donate blood because the blood banks would not have a clue if one had HH as they do not test for it.  It would have been doing him a lot of good donating and keeping health issues  at bay if he did it from an early age.

It is not a 'new' disorder.  Was recognised in the late 1800s.  Prior to genetic testing, gastroenterologists 'owned' the disorder and diagnosed by biopsies.  They could tell if you had iron overload in your liver only but not what type of gene of course.

Unfortunately there are still a lot of drs out there with their head in the sand and do not even think of nor recognise HH.  An annual test of Iron Studies would pick up this problem but only good drs do this.  Iron Studies are a window to a lot of health issues but it is generally off the scale for drs.  They usually only do Hb, or Iron and that does not tell the story.

There is no problem with using HH blood for donations, but there is still a psychological idea that it is a disease.  In the UK you have the 'mad cow' history which would cause a lot of problems for donations.  In Australia, we are not allowed to donate if we visited the UK when 'mad cow' was in existence.

Marie's ferroportin haemochromatosis is quite different.  It is caused by a different gene, and it only requires inheriting from one parent.  But it appears that she has researched both and has good knowledge.  I believe that venesections are not the whole solution for Marie as they cannot be venesected as often as we with HH can.

If you are C282Y/C282Y, you will probably not stop having venesections.  Eventually you will get to 3 monthly maintenance venesections.  I have heard of people in the Uk being told they do not have to have venesections anymore when they get to a certain level.  It will keep storing in your organs if you do not keep having venesections.  If you are C282Y/H63D it is not so aggressive and H63D/H63D is barely a problem once you are deironed.

I am homozygous C282Y, my husband is homozygous H63D and now no longer has venesections, and our son, of course, is compound heterozygous C282Y/H63D and may be able to get away with 4 monthly venesections as long as he keeps it up and not let time slip away, like he does on occasions and has to go that to 3 monthly to catch up.

Sorry, I don't seem to be able to do a short blurb on HH!!!!

PS:  I used to donate before I was diagnosed.  My Hb was always high and they would say we love people like you.  When I told them of my HH they did not want to know me.  Blood banks now venesect people with HH with a dr's request.  I found the blood banks too unreliable because they were always finding reasons not to venesect me, e.g. my Hb was over the norm, they would only do 2 attempts then I was out the door without a venesection, when my HH caused arrythmia, they would not venesect.  At the hospital, my blood was used for stem cell separation practice, so that is good.

Hi Lisa

Well mine is almost down was a 1000 at begining Jan following being diagnosed late Dec, its now down to 350 - need to get it down to 50 apparently. Just be glad once its done pain in the arse to go every wk  but I guess you have to go once every few Mths to ensure it doesn't spirial back up again once the target value is reached - Mines done that once even though I go every Wk it shot back up - not by loads but a few ML.

I'll remember that

Tx

Paul