Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Just need an experienced nurse who knows that veins don't always go the way she/he was taught and that vacuum bottles don't always hold the vacuum as they should. Had to use three bottles because one bottle had lost its vacuum.
When I had a port, the nurses used syringes and that was no fun. But that's another story.
Hope this helps.
Can't phleb techs who are doing therapeutic blood draws be creative and use whatever works? Even if it is butterfly needles inserted a wrist or ankle vein??!? I'm just wondering.
Using smaller needles damges the blood cells so the blood cannot be used for other people.
When I go for labs I tell the technician to use my hands for draw and they do.
Using smaller veins in the hands or wrists are usually not an option because the veins would collapse very quickly. Also HH blood is thicker than non HH blood especially in the early stages of phlebbing.
Miss Sophie, can you post the brand of the port? Back when I had ports (1998-2000), I contacted the manufacturer about using a port for phlebbing and I was told using a port for phlebbing was not an indication of use. That means if any problem occurs, the manifacturer can not be held libel. Perhaps the ports have been improved since then. But then I was told by a cardiologist he was glad that I had the port removed because of a risk of infection to the heart.
I've been putting in IV's for many years and know that there are lots of excuses that can be given for just not being able to get the vein. Sometimes it comes down to technique, other times luck.
I have learned lots of tricks that I use to anchor veins and also make them easier targets.
I know we as nurses are trained not to use lower extremity veins like feet, ankles, etc. as it is high risk for blood clots. (especially if putting in an IV). I have accessed feet and ankles but only with a doctors assessment and order.
As a patient and fellow sufferer of HH, I love the idea of asking the technician to use the hands and wrists for routine blood draws as it saves the antecubital vein for the phlebs.
Also, the port idea that many have used sounds good if the manufacturers approve it for HH patients to have phlebotomy done as Bronxpreston has said. I think too, it should still not be taken too lightly as it does have risks.
I know I have used patients ports as a convenient way to draw blood even back in the 90's and as long as they are flushed correctly and strict aseptic technique used it has been fine.
I get tested every three months. I get phlebbed based on the SF and TS%. My hgb and my hct are always above 14 (14.9 this time) and 44 (44.5 this time) respectfully. I get phlebbed maybe two or three times a year.
I have had my SF as low as 6 (wouldn't recommend that) with TS% 11 (hb was 12.0 and hct was 35.6). I was not a happy camper when I saw that. This was post PICC in 2003. I think the hematologist was not very knowledgeable with HH treatment. After that I became more aggressively active with my treatment and when SF is 20 or less I do say "no". My problem is when the TS% gets above 40%, I get brain fog.
It is a BardPort Implantable Port with open-ended Catheter. It is a dual port actually can be used for blood draws.. They gave me a card that states the Name of the port & flushing volumes on the back of the card, and it actually list it can be used for blood draws..So yeah...
Blood draws can mean for labs which earlier ports could do.
JMHO