Hi.

I just found this board. I have been diagnosed with "severe iron deficiency anemia".

My iron saturation is at 3% and I have 0 iron stored in my liver. This is all very new to me. My primary care doctor had me on iron pills for 8 weeks and my numbers didn't change at all.

Hematologist/Oncologist is starting IV iron today (8 sessions of 100 mg each).

I am very anxious about this... afraid of the side effects, but I want to know what to expect.

Do they leave a port in me or do I get a new IV every couple of days?

Thanks for any and all responses.

This will be a new IV each time you go in, and I can give you the overview of what my Hematologist does.

The first appointment takes a lot longer as they get the IV in, give you some benadryl (to try and lessen any potential allergic reactions) and then give you a small dose and wait an hour to gauge how you do and ensure you have no adverse reactions. The remainder of the infusion, and subsequent treatments are just about a half hour. What I don't know is the difference in amounts, received so the timing could vary for you somewhat.

The overall process isn't bad - they aren't leaving anything connected when you leave, and they are there paying close attention so they can deal with any pain you might experience as everyone is a bit different.

Good luck!

Thank you so much. All my research (internet junkie) focuses on the potential for anaphalytic shock (and death!)... frightening...

I hope I have no side effects. I'm going in with a positive attitude and trying to have low stress, but easier said than done!

I can't believe you are in Groton... My husband (and his whole family) are from New London and Groton!

Just wanted to check in and see how the Infusion went - did you have any side effects?

I know what you mean about being an internet junkie - I have to research everything, and I know it annoys the Dr at times, but I just can't move forward with stuff without understanding WHAT they are doing and WHY, and sometimes they just don't want to tell me that, but tend to give me "This is just really needed right now" to which I tell them that simply isn't enough detail for me to make any sort of informed consent or decision. When my HGB took a nose dive a couple weeks ago I had to get a blood transfusion, and I was feeling the same way you were about the Iron Infusion - I knew I needed to have it done after doing the research, but my biggest fear was not getting anything from infected blood but simply human error with typing / cross match and having a hemolytic reaction.

Hope you are feeling better and it went well.... Cheers from Groton!

Hi. It went well yesterday. I do have a question, though - are they going to have to stick me every time? I thought the doctor said he could put something in and leave it. I have two infusions this week, three next week and three more the following week. They had to stick me twice yesterday because my veins are awful. What do other doctors do?

I didn't get sick except for some joint pain, but pain is what led them to the blood issue anyways (from an abdominal mass that they can't remove until my blood is "fixed").

They gave me two tylenol, a bag of benadryl, a bag of steriods then a bigger bag of the iron (InFed). They said it will be the same procedure each time.

I was anxious about the side effects, but the nurse told me they haven't had any serious reactions (knock on wood). She also advised me that if you have allergic reactions, it usually happens the first or second infusion - does this match up to the information you have heard?

Have you lived in Groton your entire life? My husband has three brothers and they all grew up in NL/Groton... (range in age from 42 down to him, the baby, at 33).

Thank you so much for your answers.

P.S. How was the blood tranfusion? If after my 8 infusions, the blood levels are not good - we have to go that route so they can do surgery to remove the mass.

Glad to hear that it went well overall!!

With my Dr I get stuck everytime but I have it done once a week right now (and have that same issue with terrible veins - joy of the rolling and collapsing making me a pin cushion). I think it might be possible to talk to them about leaving something in, but my guess is they try to avoid that due to possible infections since you aren't in a hospital, but it never hurts to ask about that - capping and tape might do the trick, you never know.

I actually bounced all around - Portland, Seattle, then upstate New York and now here in G/NL to work in the world of pharmaceuticals (albeit just from a geek technical side for IT) - so far I actually love it here (almost 2 years now).

As for the blood transfusion - it wasn't bad at all. You go the day before to give a sample so that they can type and cross match it, and they also mix some of your blood with the donor blood to check for any allergic reaction, to make sure your blood won't start creating antibodies against the donor blood. When you get there (typically outpatient at the hospital in the chemotherapy area) they will give you tylenol and benadryl (oral), check your vitals and then get the IV in and then with each unit they will run it on a slow drip for 15 minutes, check your vitals again and ask how you are, and then speed it up a bit. If you get more than one unit (I had two, and I am guessing you would end up with at least that as well) they will give you a bag of lasix in between due to the volume of blood they are pushing (so get ready to head to the bathroom with your IV pole often!), and then they repeat the process of the 15 minutes and then the remainder of the second unit. Each unit takes upwards of 3 hours to complete, so with 2 or more units, you can see that it quickly becomes and all day process. I was there at 9:30 AM and I left just short of 5 PM. They did have to stop mine for a bit because I did have a very mild reaction to the second unit with some hives (literally only a handful) but some extra benadryl took care of that and I felt better walking out of there then when I walked in - very noticable difference. I can tell you I was quite scared going in, but knew I needed to - and it worked out great. When I went in my HGB was 7.8 and my check up a week later it was 9.5 which still seemed low to me, but I think they hope to finish raising things through the IV Iron. Now if I can just avoid getting to that point again....

Thanks !!

My hemoglobin is 9.2 L now (that's up)... my iron is 16 L, with 4% saturation.

I get my second infusion today... so we'll see how that goes.

I am not feeling well today.... I don't know anything about this stuff, so not sure what is normal and how I should feel. I feel light headed (almost like my blood sugar is down).

Trying some orange juice now. I am anxious about the infusion so maybe it is stress as well!

I am in the IT industry as well, Director of Human Resources for a terrific technologies company.