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.
someone whose mother had a lot of blood work and other types of treatments suggested that I consider getting one of these. Since then, I've read also a bit about how the veins can get scarred over time from frequent blood letting.
I am doing every other week phlebs for a few months and then dropping to a maintenance schedule of maybe between every 2-4 months.
I am not sure about getting a port-a-cath - I may not have these with such frequency that it merits one.
But...over the long term, should I consider this because of how my veins might look at 70? (if I get there that is ;)
And the perceptions people might have of seeing 'track marks' on my arms.
I also read about some of the down sides of the port-a-caths...infection etc and I'd think it would be uncomfortable. Seems a little sci-fi too not that I wouldn't mind being a 'bionic woman' ;)
what are your thoughts?
I am doing every other week phlebs for a few months and then dropping to a maintenance schedule of maybe between every 2-4 months.
I am not sure about getting a port-a-cath - I may not have these with such frequency that it merits one.
But...over the long term, should I consider this because of how my veins might look at 70? (if I get there that is ;)
And the perceptions people might have of seeing 'track marks' on my arms.
I also read about some of the down sides of the port-a-caths...infection etc and I'd think it would be uncomfortable. Seems a little sci-fi too not that I wouldn't mind being a 'bionic woman' ;)
what are your thoughts?
AND WHAT PART OF THE JUNGLE IS CINQUE TERRE?? I HAVE BEEN ALL OVER THIS PART AND AINT SEEN NOTHIN LIKE THAT..
IS IT GOOD TO EAT?? HARD TO KEEP LIT?? DOA!!
I THOUGHT WE HAD TO SPEAK ENGRISH IN HERE??
WAIT . WAIT... YEP I THINK I HAD THAT BACK IN THE 70'S AND GOT RID OF IT AT THE FREE CLINIC...... :) SILLY GIRL YOU KNOW YOU CAN'T GET OVER ON AN OLD MONKEY LIKE ME..
HAVE A MARVY DAY MEGAN.. DC
I have a port and am extremely happy with it.
My veins were very small and rolled, at my Drs. advice I had a port placed. There is no discomfort, just a slight prick when the needle is inserted. There is only a chance of infection when you first have it placed. Once it is healed it is under the skin.
Nothing Sci-fi about it. I would be one miserable stressed out person if I had to worry about getting stuck numberous times when I went for my Phleb. So glad I have my port.
Sandra
Lots of chemo pt's get ports. They need to be "flushed" every 4-6 weeks, as long as they are in. They can also have their own set of problems. For HH pt's, I think ports are basically used when veins are too small or are shot. (maybe by causes other than frequent phlebs). I have a small medical ID (like for a small female or a little girl) which I have on my necklace, with my ususal pendant. I had it engraved on the back even tho they did have to use teenie-tiny letters and had to hyphenate it.
Today was phleb #72 for me and my arms look great. (I didn't drink enough water & woke up late for my appt today so the nurse had to move the needle around a little. It's bumped up but it'll be OK in a day or 2). I can be a sissy but I rarely EVER have anything that resembles pain or discomfort with the needles because I use EMLA cream. Several of the members here had suggested it and it is as WONDERFUL as THEY ARE!!!!!! WooHoo for the EMLA :)
ps... if we live to be 70, and I plan to, we might not give a s*** what our arms look like because if we hadn't done the phlebs,
well.... u know..... maybe no birthday cake:(
Good Luck..........
zzzzzzzzz
silly monkey! The "port in Cinque Terre" that meg's referring to is a particular type of wine that she had while on holiday in a foreign city
zzzzzzzzzzz
:-)
Ports are generally only used as a last resort (at least here - Netherlands). It was talked about in my case, as I have very thin and deep veins which tend to 'run away' at the sight of a needle but thus far I've resisted.
As to infection, everytime the port is accessed is risking infection and damaging the heart. A cardiologist told me he was glad when my last port was finally removed because of risk of heart infection.
I think a HH port should be flushed more frequently than 4-6 weeks because of the thick blood issue. That's how often I was flushed and it clogged.
Yes, I still have bad veins (unfortunately haven't grown bigger ones) and sometimes there is a problem but I go to an oncologist and the nurses there are used to small veins. OK, I'll admit they do toss a coin to see who phlebs me (loser has to phleb me). LOL
JMHO
Phlebbing since 1998.
it or the dr who installed it damaged my vagus nerve and my body all but shut down on me.
unless you completely trust your dr or the dr installing the port DON'T DO IT. they always tell you that there are risks but they never tell you how to live with the damage or even act like they care......good luck!
Thanks for correcting me. My Mom has her port flushed every 6 weeks BUT she had CHEMO. I know you are right about flushing ports that are being used for phlebs because our blood is thicker. And thick blood is one reason for my concern for the extra work it is putting on my heart and don't want to have a heart attack.
Thanks again,
zzzz
Are you taking either flax seed oil, fish oil or red yeast rice supplements? They work as blood thinners. I had to stop the flax seed oil because of all the bruising it was causing.
Have a great day!
Yes, I do Fish oil (1,000 once p/day but I'm going to increase it to twice p/day after my blood draw Monday). I don't take the flax seed or red yeast rice-don't know about this one.
I've read that alfafa sprouts & onions are blood thinners, too. I eat onions.
I'm having my ferritin drawn Monday and I'm praying it's down, down, down!
zzzzzzz
I am new to my diagnosis of HH, I was diagnosed at the end of November. I have been told in the past that my blood is thick and advised to take a daily aspirin. I didn't know that this could be due to HH. Is this common?