Iron Overload

bobdc · Joined: 09 Dec 2009 Posts: 6

I have read on this forum that many people are getting phlebotomies at home by there partners. I gave blood at a donor clinic and the large needle hurt and made a mess of my arm. My wife works in medical research and has a nurse friend who could train on the process. My problem is finding the equipment to do this. I am wondering what equipment would be needed to do phlebes at home and where to get it. I live in southern Ontario.
Thanks.

ggilchri · Joined: 01 Mar 2006 Posts: 21 Location: Calgary

Hi am not a Doc. - just a long time HHC patient. My hemotologist, whom I respect won't even do Phlebs in his office because "you just never know" when a patient is going to have an adverse reaction - like a crash in blood pressure. Without the proper equip. on-hand this kind of thing could get vert dangerous - he says.

Gerry

Michael NZ · Posted: Tue Mar 09, 2010 4:55 am Post subject:

My wife does my weekly phelbs at home using a butterfly needle, tube and 25ml syringe.
Only a small amount is taken each time 60 - 150mls, depending on the periodic CBC blood tests. This small amount does not ever give any adverse reactions.
I have a friendly doctor who allows me to purchase the equipment through his clinic.
Regards Michael

bobdc · Joined: 09 Dec 2009 Posts: 6

After several attempts and sorting out the equipment and method I now have done 3 successful phlebs at home. I do 250 ml a week and have had no adverse issues. I use a butterfly needle and silicone one end in the end of a plastic tube that runs down to a 250 ml cup on the floor. My wife sticks the other end of the needle in my arm. The trick was to run a bit if isopopyl alcohol through the tube first to prevent clotting. I can sit comfortable watching TV and just look at the cup once and a while(it takes about 35 minutes). This for me beats driving to a hospital and paying $20 for parking and waisting half a day each time. Doing this on my schedule just when I am ready for it helps me feel in control of the situation. We do it late at night so I can go to bed shortly after.
Regards, Bob.

Merlyn · Joined: 22 Jan 2010 Posts: 49 Location: Vancouver island

BobDC-what size needle do you use, I am debating buying a HemoCue and doing it myself because I am not sure my Dr. is going to go for adequate treatment... plus I use a wheelchair and I find it very difficult to get to the hospital in the morning, they only get phlebotomies until one o'clock. Sometimes this is very stressful. I would use smaller amounts like you do.

bobdc · Joined: 09 Dec 2009 Posts: 6

Merlyn, I use 21 gauge needles, the smaller size makes the job a bit longer but it is much more comfortable then the big 17 gauge needles they use at the clinic and I heal quickly.

Merlyn · Joined: 22 Jan 2010 Posts: 49 Location: Vancouver island

BobDC-thanks for the answer. I'm not sure I care how long it takes, I am not in any great rush, and I absolutely detest the needle that they use at the hospital. I don't find it painful, but I think over time it must do a number on your vein. I also like the idea of going a bit slower, have not had any reaction to the removal of 500 mL as far as blood sugar dropping feeling dizzy or anything, but it does seem like a bit of a shock to the body, and I would like to try doing a lesser amount more frequently. I am going to order some needles from imed.com, see if I can get them actually I haven't got through the checkout. I'm going to send them to my relatives first, have them shipped to Canada because I don't know that they would get through customs? Anyway, thanks for the info. I feel so much more hopeful these days, considering my reaction to my two phlebotomies. I had no idea MS could be related to iron, and I was ready to pack it in, not to be a bummer, but I was getting worse month by month, drastically worse since menopause. I thought I was a goner, and I can't believe it's this simple. I know people must feel cursed by having to do phlebotomies, but for me it is "you mean that's all it takes?" Different perspectives...

bobdc · Joined: 09 Dec 2009 Posts: 6

Merlyn, good to hear you are getting things sorted out.
After I had a chat with my doctor, about Dr. Zambony's work on Ms in Italy on Iron overload in the brain, my doctor scheduled a jugular vein ultrasound for me. That is next on my agenda.

philipds · Joined: 10 Jan 2010 Posts: 8

More information to prevent problems on:
http://www.hemochromatosis.co.uk/tpph.html

Phlebotomy at home in France (by a nurse):
http://www.hemochromatosis.co.uk/phlebotomy/phleb-home.pdf

And in the following article a 19 gauge butterfly is mentioned, used by dr. Barton from Birmingham, Alabama:
http://www.hemochromatosis.co.uk/phlebotomy/howitreathemochromatosis.pdf

Philip