My Mom had a port with her chemo treatment from Nov '09 thru Feb '10. The port stays in for about 1 yr post chemo (to make sure they won't need it later). She LOVED it!. Made for such easy lab work & chemo treatment and later.. 2 blood transfusions!

I had my first phleb last week (ferritin 4097 !!) and I will see a hemotologist on Wednesday. I'm going to ask him the pro's/con's of a port because I'm afraid I'll be doing 1 or 2 phleb's weekly for over a year (ferritin 4097) before slowing down. Otherwise, I may end up looking like an IV drug abuser!

Sandra, I do not know alot about ports but if you have that much trouble with a small needle it might be a good idea.The phleb needles are huge. I do not think you will have to phleb for very long if you do it weekly. Good luck

zzz, You will definately have to phleb for over a year but do not worry about looking like a drug user because you will not. You may scar up some but it just looks like little white dots. I had to phleb weekly for a year and I often thought about a port and I still might use one when i get older but right now my veins are still holding up very well. Keep us informed and good luck.

Thanks Gidget! I appreciate your input. My veins are good, at least for now! Should I alternate arms?

I alternate every time I go in. Just to give each arm a break, the phlebotomist recommended it also. He is used to seeing my scared up arms but when I get a nurse that I do not usually have they always comment on how scarred up they are and how tough my skin is now to break through for the lidocaine.

I also alternate my arms with each phelbotomy .I have been getting it done over a year now and you cant see nothing for marks ,I was going ever 10 days for treatment for a long time .

Hey everyone.Sandra, I was told if you have good veins you would not need a port.Although sometimes think it would be nice. Just had 62nd weekly phleb. get iron checked in two weeks, last check at 1813 from start of 4100+. I also alternate arms, it's nice to give them a break. Hope all goes well for you, good luck.

HEYYYYY, Solidiron............. you win! Your ferritin slightly tops mine. Mine is 4097 and I just had my 2nd phleb. How long have you been phleb'ing? How long does your Dr think it'll take to get you de-ironed? I knew I'd be doing it weekly for over a year, but have no idea how long it really takes. (considering all people are different) I won't get my new ferritin level number's until Thursday. I might get an idea how quiclky I deplete, I guess. There will be 2 weeks between the initial ferretin check and then after the 2nd phleb. We just have to hang in there:)

Went for consult with Hemotologist today. The Dr. had the nurse over the Phelb & chemo dept look at my arms real good and she said she would definately recommend that I get a port placed for the phelbs. So I have a appt with a surgeon July 19th. I hope I feel better after this gets started. I am so tired all the time, absolutely no energy. I have brain fog very bad and my hair is falling out.

No one has tried your arms yet? Isn't that usually reserved for those who have bad veins? A port is a surgical procedure... my Mom had a port for her chemotherapy & it was GREAT. I am a fan of ports but I have chosen to use it as a last resort. I've had 2 phlebs (3rd one on Thursday) and I will be phlebing for over a year (ferritin 4097) until maintainence phase begins.
Good Luck

Hi All, I was diagnosed with HH in June last year. My GP was handling it at the time. My ferritin was 2298
He recommended that I go for phelbs every 6 weeks. Well that didnt work. My veins are too small and my blood is too thick.
He then recommended that I have a port put in. So I did. BIG mistake. The first time I went to have blood drawn they told me that a port is for putting medication in and is not used for drawing blood. After speaking to the specialist who put it in he recommended that I go to him at his rooms and he will do it for me. Well no luck there either. A port can be used if you have vacubags which they dont make or have in my country anymore. He then decided that I should have it done in hospital theatre. So every 4weeks I went into theatre to have it done. Not fun believe me. Anyway this only happened 3 times as the port then did not want to work. He then said that he would put me into theatre once again to see if he could unblock it. I was awake during this procedure. The specialist broke the pipe while trying to pull it back and said that he would not remove it then as I was in too much pain. So now I had a lump in my breast which served no purpose. Anyway I then did some research of my own and asked my GP to refer me to a Hematologist. I first saw her in January this year. She said that they would try and draw blood they couldnt. She then applied to my medical aid to have me put on Exjade. I did my research on Exjade and was worried about all the side effects but had no other choice. I started Exjade at the end of February. The side effects I experienced were nausea, diarrhea and dizziness. This lasted for 3 weeks. I now love exjade. I have energy again (I can make it past lunch time).My ferritin dropped to 1876, 997 and now 398. So please if you are thinking about having a port put in think twice please. BTW I love you forum makes me feel good to know that I am not alone and that other are feeling the way I do.

ZZZ, Have you checked your ferritin levels yet after your first few phlebs? I am just curious how you are doing and how fast your numbers are dropping.

Gidget, I got a 2962 :) Dropped over 1100 after the first 2 phlebs! I had hoped they would do it again today (after my 4th phleb) but the nurse said insurance probably won't allow it but every 4 weeks. I'm going to call my Humana nurse tomorrow & check with her.

My HGB was 11.6 today. She said if I hit 10.0 that Ill have to skip a week.

Thanks for asking!

ZZZ, That is very good news, with drops like that I bet you will be done in a year if you are able to stay on track and keep your hemoglobin up.I was able to phleb 52 times in a row weekly and my hematocrit never dropped below 30. I call that my year from hell but when it was over I felt so much better that it is hard to even put into words. Good luck

I am glad to hear that your levels are getting much lower! I am wondering what my phleb frequently will be...my ferritin is 297 and my saturation is 71%. So I am not too bad, I hope it's not too many.