I'm in Australia so it may be slightly different but for many people having blood taken is the exact same thing as giving blood. So if you have ever done that before and you were fine then you don't have too much to worry about. In Australia you can just go to the Red Cross and get it done. I collapse after every one so now I have to go to the venesection clinic in the hospital so I can have an IV in one arm and blood out the other. In Australia every major hospital can do it for you.
If you're 'not there yet' I would assume that you load iron quite slowly which means you probably wouldn't have to have lots of venesections (phlebs) together. You may be able to get away with only having them a couple of times a year which means your veins will be fine. As my ferritin was only 600 I am deironing through having one a month and I load pretty fast.
Don't get too scared by some of the stories of bad experiences on here. If your ferritin is low enough that you don't have to de-iron yet then you're not going to end up doing twice-weekly venesections. Obviously if your doctor or specialist says anything different from what I've said go with that.
Best of luck with everything.
And as far as being ok with needles goes I think you'll just have to suck it up :(

phlebs, is the same process as donating blood. if youve ever been to a blood bank, that is whats done. some blood banks in the u.s. take hh blood, some do not (like the red cross). now some individuals use the red cross, but dont disclose the diagnoses of hh.
any hospital can also do phlebs, that is where i started, and then found a local blood bank that accepted hh blood, and ive stuck there. the hospital was just throwing the blood away, the blood bank uses the blood for other individuals in need of blood.

I have 4 phelbs a month then off 2 months.Its difficult but you start to get use to it.My problem is the body pain wow gets worse older i get does any one know what you can take for the joint pains ty

So what I would do if I knew what I know now years ago? I would become a donor at the red cross a few times a year.

Why go through the drama of a high ferritin number with potential organ damage. I was 1300 when discovered and had to go through weekly phlebotamies for a year..

I one of those that goes to the red cross and doesnt disclose I have HH. My hemotologist assures me my blood is perfectly fine for the blood pool and the red cross question si do you have a blood disorder. the answer is no as we have a digestive disorder.

If you are concerned about your iron levels getting too low, just have your docs do a ferritin test and keep that number around 50.

Can you give us your lab results? I don't trust doctors saying "You're not there yet."
Iron blood levels for those with HH need to be lower than the non HH people. The iron damages organs and joints. With joints the iron never leaves the joint.

How old are you (age span)? Are you male or female?

Here in Texas I go to Carter Blood Care. They have me in and out in 20 minutes. It cost nothing.

Haynes, As a couple others already said, you need to know your own numbers and keep your ferritin in the 50 range when you have HH. Knowledge is power and you have a right to all of your health data, so just ask for it. I keep records of every blood test and the dates I give blood. It helps to get an idea of how quickly your body reacts.
I found a place in Virginia near where I live that uses HH blood and they are grateful for it! Mine is O pos and they always just about kiss my feet when I return every month. I think the blood donation center has to request a special permit to use the HH blood but more and more are getting on board.
Just do an internet search in your area and you are bound to find a place that will take your HH blood for free.
I'm a nurse and I "borrow" some EMLA cream from work and put it on before donating. It numbs the area pretty well but you have to use a good bit and cover it with saran wrap for 45 mins to get it to penetrate the skin adequately. I use it with the kids at work, but with those big 16 gauge needles they use in the blood donation centers, I found myself dreading it so bad that I began using it too. They looked at me kind of funny the first couple times and now I'm the lady that comes in with the funny cream on her arm. You can ask your doctor for a prescription for it.
My son has HH, but not the double mutation like I have. He has the slower loading C282/H63 type. So as not to scare him, I kind of encourage him to give blood once or twice a year and get his numbers checked yearly with a physical; he's only 23. Other than that, I rarely talk about it with him.
Good luck and you have a great community of knowledgeable friends here.

Like tricia said...... EMLA cream!

Not long after I joined the group, I was lucky to hear about EMLA. I DO wish I had been told about it from the docs office/blood collecting nurses from day one, BUT it has kept me sane thru the phleb process.

It is a prescription cream 5% lidocaine- 5% prilocaine. I apply a small glob and cover it with a large bandaid, the kind that seals all 4 sides. It doesn't get all over my arm or my clothes. I put it on the arm I want them to use (do both arms when you aren't sure where they're going to stick you). I apply it before I leave home and I'm nice and numbed when I get there;)

And like the others said.......Keep copies of all lab work b/c you'll want to reference it later. I started a binder to help me keep it straight.
Good luck,

zzzzzzzz

Like tricia said...... EMLA cream!

Not long after I joined the group, I was lucky to hear about EMLA. I DO wish I had been told about it from the docs office/blood collecting nurses from day one, BUT it has kept me sane thru the phleb process.

It is a prescription cream 5% lidocaine- 5% prilocaine. I apply a small glob and cover it with a large bandaid, the kind that seals all 4 sides. It doesn't get all over my arm or my clothes. I put it on the arm I want them to use (do both arms when you aren't sure where they're going to stick you). I apply it before I leave home and I'm nice and numbed when I get there;)

And like the others said.......Keep copies of all lab work b/c you'll want to reference it later. I started a binder to help me keep it straight.
Good luck,

zzzzzzzz

Like tricia said...... EMLA cream!

Not long after I joined the group, I was lucky to hear about EMLA. I DO wish I had been told about it from the docs office/blood collecting nurses from day one, BUT it has kept me sane thru the phleb process.

It is a prescription cream 5% lidocaine- 5% prilocaine. I apply a small glob and cover it with a large bandaid, the kind that seals all 4 sides. It doesn't get all over my arm or my clothes. I put it on the arm I want them to use (do both arms when you aren't sure where they're going to stick you). I apply it before I leave home and I'm nice and numbed when I get there;)

And like the others said.......Keep copies of all lab work b/c you'll want to reference it later. I started a binder to help me keep it straight.
Good luck,

zzzzzzzz

Like tricia said...... EMLA cream!

Not long after I joined the group, I was lucky to hear about EMLA. I DO wish I had been told about it from the docs office/blood collecting nurses from day one, BUT it has kept me sane thru the phleb process.

It is a prescription cream 5% lidocaine- 5% prilocaine. I apply a small glob and cover it with a large bandaid, the kind that seals all 4 sides. It doesn't get all over my arm or my clothes. I put it on the arm I want them to use (do both arms when you aren't sure where they're going to stick you). I apply it before I leave home and I'm nice and numbed when I get there;)

And like the others said.......Keep copies of all lab work b/c you'll want to reference it later. I started a binder to help me keep it straight.
Good luck,

zzzzzzzz