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Old 05-17-2010, 06:30 AM   #1
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Dextran infusion concerned first timer

Hi everyone,

I am going in tomorrow for my first Iron Dextran infusion and I am a bit concerned after speaking to the nurse about it and reading the side effects. She said that the test dose is given ad then they give the benadryl right before the treatment begins. She said it is about 20 minutes between the test dose and the actual treatment. Then I asked how long the actual infusion takes and she said, one hour.
From reading this forum I see that it usually takes like 3 hours or so with Dextran, and so I am concerned that maybe they are doing it too quick at my hematologist. I also asked about the bone pain and she said I could take tylenol lol.... now from what I have been reading it seems like the pain is a bit strong for Tylenol.
I am also very concerned about the side effects also. I wish I didn't have to get it done, but I have the iron deficiency anemia for a very long time now, and the oral iron 3 times a day was not making a difference.
Does anyone here have Dextran infusions lately? I see a lot of posts for Dextran but they are our of date and I wanted to know if anything has changed.

Thanks all!

 
Old 05-17-2010, 10:14 AM   #2
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Re: Dextran infusion concerned first timer

Hi Altaztaz,
My daughter, who is 11, had a dextran IV infusion on May 6th. The infusion for her took 5 hours. First hour tester dose and then next 4 hours the iron which goes in slowly. Make sure that the nurse gets the IV in correctly because if the iron goes into the tissue instead of the vein, then you will end up with a permanent brown stain. Why I'm saying this is because when my daughter had her infusion the nurse didn't have the needle in the vein, it was actually in the tissue. When the nurse first put the IV in my daughters arm, she could not get a blood return. The doctor needed some bloodwork before the infusion was to start. She kept trying but no blood return. At this point my daughter was really upset because the nurse was moving the needle a lot. So the nurse decided to flush the IV to see if it flushed. She said it flushed so it must be in the vein. So she left the IV in and decided to get blood from her other arm. Well, I trusted she knew what she was doing and then the tester dose was started. After and hour and a half into the infusion, my daughter started to complain about her arm hurting and burning. When I checked her arm, it looked like it was swelled. So I went to get the nurse to tell her about her arm. Two nurses came in to check her arm and both said it didn't look swelled and it wasn't changing colors. The nurse unhooked her IV bag and decided to flush her IV to see if it flushed. She said it flushed so it must be in the vein. They couldn't explain why her arm was hurting and burning. So they left and my daughter is still crying her arm hurts. The nurse came back after another hour and a half to check her blood pressure and that is when she noticed her arm didn't look good. So she went to get the head nurse and she told her to take it out but the nurse didn't want to because she said it flushed. So the nurse took the tape off my daughters arm and moved the needle down just a bit but without removing it and she got a blood return. So the needle actually was in the tissue instead of the vein. After the needle was fixed, my daughter's arm didn't hurt anymore. For the last 2 hours of the infusion she was fine. After the infusion was done, the nurse took the IV out and there was a little brown line on her arm. She told us to wipe it off when we got home. We left the hospital with my girls arm swollen and the nurses saying it didn't look swollen. Well, the next day when my girl woke up, she showed me her arm, it is all brown. The area that is brown measures 12 inches long and is brown all the way around her arm. This is how much her arm ended up swelling. It took awhile for me to find out that the brown is a permanent mark and it will never fade. I am very upset because the nurse should have known that about iron, it stains when going into the tissue. Just be sure the nurse knows that before you have your infusion. My girl ended up vomiting for two days and her body hurting like she had the flu. If you ask them about nausea and vomiting, they'll tell you no, but it does happen because I ask the nurse and she said no that you don't get sick, but my girl did. My girl is like you very anemic and didn't absorb any iron through iron tablets. We go back to see the hematologist on thursday of this week, and I know he is going to be very upset at what happened. My girl had iron going into her tissue for three hours and only getting iron in the vein for two hours. I hope this helps you, but it not meant to scare you. I'm telling you this that way you'll know to make sure the IV is in the vein. I would like to hear back from you.

slynne

 
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Old 05-17-2010, 05:29 PM   #3
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Re: Dextran infusion concerned first timer

Slynne,

Thank you so much for replying.
I am outraged at reading your post! your poor little girl! I know exactly what pain she was feeling with the iv line when it is not in place. I have had iv many many times and when it is not in place it hurts a lot if they try to push any medicine through it. I have terrible veins and it usually takes several pokes before they get my vein.
How is she feeling now? I cannot believe the nurses didn't listen to you when you said something was wrong with her arm. Have you thought about taking legal against them? A 12 inch brown stain in her arm is a huge deal and they need to learn to listen to patients. I am a mother also, and I am just so upset that they did that to your little girl..... so sorry. There is nothing they can do to fix it?
Everywhere I read about it taking at least 3 hours or so, so I don't know why they are going to push it all in in 1 hour . I also have very low blood pressure, so I am concerned this will get it even lower and i'll pass out!
I will let you know how it goes, and I hope your daughter feels better.
Thanks

 
Old 05-17-2010, 08:04 PM   #4
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Re: Dextran infusion concerned first timer

Hi Altaztaz, I actually have gone through the iron infusions myself for 3 months, 3X a week. My sessions were about 20-30 minutes of pre-medication and the actual iron took about 1 1/2 hrs. The very first time I was to try infusions, I reacted to the Infed (dextran) and I didn't have that particular iron anymore. I was changed to Ferrlecit and was fine, with the exception of feeling very tired and flu like when I got home each time. However, my 3rd month into my treatments, I started reacting with sore to touch and a burning feeling on my upper back and shoulders. So we finally stopped. I was supposed to go for a visit to see my hematologist again to discuss other options and haven't been back since. Not because I don't want to but each time I go there's a co pay and other costs I am responsible to pay for after my insurance has covered most of it. So it has been costly for me. I needed a break just for now but I'm sure my doctor is wondering about me. It's been 5 weeks since we stopped the infusions.

 
Old 05-19-2010, 07:07 AM   #5
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Re: Dextran infusion concerned first timer

Hi Altaztaz,
How did your infusion go yesterday? Thanks for your reply. Yes, I am taking legal action because I feel my daughter needs some kind of compensation for what she went through. The brown stain is permanent and won't fade either. We see the hematologist tomorrow and I'm curious to see how he reacts to her arm. Her arm is still hurting and she still has some nausea. I'll let you know more after Thursday.

Take care,
slynne

 
Old 05-20-2010, 04:44 AM   #6
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Re: Dextran infusion concerned first timer

Thanks ladies for the replies.

Infusion went ok. I am just nauseaus an I feel like I am getting the flu since my body aches a bit, but nothing I can't take. The nurse was wonderful. She found my vein immediately and it really didn't hurt. I am used to being poked at least 3 times to find a vein! They gave me the test dose and I did ok with it. Then they game me Benadryl and it made me so drowsy I couldn't talk! after the Benadryl they started the infusion right away and I just felt flushed for a few seconds and very drowsy. Then I went home and stayed home yesterday also. I get strange pains throughout my extremities, but they come and go so its not bad. Also I feel kinda sore to the touch in some areas.. Today I am just very nauseaus! the drive to work was no fun. I do feel very weak, which I thought would be the opposite, but I guess it is too soon to see any good results from the iron. I go back to the the Hematologist in two weeks and if I need another infusion he will send me in to get one.

Yvette, I guess I am having an experience close to yours with the soreness and tired. I really hope this infusion was enough so I don't have to keep getting them, but I am about to get a very very heavy period and I think that will knock me down again! I don't get periods on my own, so I take a synthetic hormone pill and then get a fake kinda period, but it is horrible, because it is way too long and heavy enough I have to stay home most days. Everytime this happens I end up more anemic! I will also be having an issue with the insurance, which is ending in June 30th so hopefully all will be done by then. Good luck to you with you infusions. Let me know how it goes next time.

Slynne, I am glad to hear you are taking legal action. I would do it also. I cannot believe how negligent those nurses were! Is there anything they can give her for the pain in her arm and nausea? poor little one, should not have to be in pain any longer. Please let us know what the Hematologist says. I will keep her in my prayers.

 
Old 05-20-2010, 06:46 PM   #7
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Re: Dextran infusion concerned first timer

Hi Altaztaz,
I'm glad to hear your infusion went well. My girls body hurt in different places each day. She said her body hurt all over and certain parts were sore to the touch. It will get better in about a week. We saw the hematologist today and her hemoglobin went from 9.4 to 10.7 in two weeks. He was pleased with that and so far she doesn't need another fusion right now. Her crohn's is still flaring and it needs to get under control so her iron doesn't drop again. She will get all iron levels checked on June 23rd when she has her next remicade infusion. Remicade is nice because it also helps with her arthritis in her spine, neck, and feet. She was diagnosed at the age of six and she has known pain ever since. She has had two spinal fusion surgeries. One at age 8 which didn't take so the other one was at the age of 10. This fusion took because they used her own bone from her hip and also rods and screws. She had a third surgery because one of the screws fell through and was pinching on a nerve and they had to remove the screw and put a new one in. The spinal fusion really didn't help her lower back pain. She can't stand, sit, or walk long without her back throbbing. She is homeschooled so she can ly down when she needs to. I'm telling you this because most of the time she can handle her pain. As for her arm, the doctor said it will take time for her arm not to hurt. For the nausea, she is taking zofran which has helped her.

We met with the patient care coordinator today and we were supposed to see another person, but that person wasn't in today as well as the nurse who put my girls IV in. Gave the doctor a picture of her arm so he could show the nurses what they did. Her arm is permanently stained brown. As for the legal part, I haven't heard from the laywer yet. I bet he doesn't take the case because he doesn't see anything coming of it. If that is so, should I keep looking until I find the right laywer? Do you have any suggestions? Sorry if I went on to long. My friends have kids that are healthy and don't understand what my girl goes through and also myself for being her mom.

Hope to hear from you.
Slynne

 
Old 05-21-2010, 05:14 AM   #8
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Re: Dextran infusion concerned first timer

Slynne,

I know exactly what you mean because my little girl has had some medical issues since birth, and seems like people with healthy kids don't understand. My daughter has not gone through the pain your little girl has gone through, but it is hard on me as a mom also. I gotta say, your daughter is pretty tough! with all those surgeries and infusions!
About the lawyer, you are right. He is probably not calling if he doesn't see much in it for him. I would look elsewhere. If you find a lawyer that is truly passionate about the law and not just the money. Easier said than done, I know, but there are some out there.
Let me know hoe it goes!

Altaz

 
Old 05-21-2010, 06:18 AM   #9
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Re: Dextran infusion concerned first timer

Hi Altaztaz,
Thanks for the kind words. I will keep you posted on the laywer situation. It is nice to talk to someone who understands what your going through. How old is your daughter and what does she face daily? I hope we can be computer friends.

Have a good day,
Slynne

Last edited by moderator2; 05-22-2010 at 02:34 PM. Reason: please do not post your email address

 
Old 05-22-2010, 05:23 AM   #10
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Re: Dextran infusion concerned first timer

Hi Slynne,

My daughter is 8 and has a history or Neutropenia, since she was little she ran very high fevers constantly and her neutrophils (part of her white blood count to fight infections) would get so low we would have to keep her in the house or she would get any infection out there. Every time she went to a party, park, chuckee cheeses etc she would come home with a stomach bug and viruses. Due to that she was always sick. It was getting better until last year when in May she was one of the first kids to get the swine flu in my county and so she was back in the hospital for a few days with her counts low and really sick. After that she started getting asthmatic bronchitis. Te last one was two months ago and I think we are in the clear now! she has been doing good since then. I always had the issue with not making it to family reunions and gatherings and people not understanding why, and actually saying we were just antisocial and overprotective. Of course I have to protect her! if there was meningitis going around (which a kid in the family had two days after a family get together) she would have caught it and would not have been able to fight it off... Anyway that has been our story, but thank God she is doing much better now. and see seems to be outgrowing it.
I will be praying for your little girl. Keep me posted

Altaz

Last edited by moderator2; 05-22-2010 at 02:35 PM.

 
Old 05-22-2010, 06:33 AM   #11
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Re: Dextran infusion concerned first timer

Hi Altaztaz,

Sorry to hear about your daughters problems. I will keep her and you in prayer. You know, sometimes family can be worse than friends. If it's not happening to their kids, then they don't want to understand. All they want to do is complain.

Have a nice weekend!
slynne

Last edited by moderator2; 05-22-2010 at 02:36 PM. Reason: please do not post your email address

 
Old 05-23-2010, 06:55 AM   #12
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Re: Dextran infusion concerned first timer

Hi Altaztaz,
Seems my daughter is getting hives on her arm where she is brown. She says she also has a spot that hurts when you press on it. She was sick last night, I think her crohn's is acting up. Will call the doctor Monday to see whats up with the arm.

Hope to hear from you.
Slynne

Last edited by moderator2; 05-23-2010 at 07:00 AM.

 
Old 05-23-2010, 05:06 PM   #13
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Re: Dextran infusion concerned first timer

Re the OP, I remember reading that taking an NSAID (eg 2 Aleave tablets) and an antihistamine (eg 1 Zyrtec tablet) before the infusion can help reduce the reactions quite significantly - might be worth discussing with your doctor before you have the infusion done?

 
Old 05-24-2010, 04:35 AM   #14
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Re: Dextran infusion concerned first timer

Slynne,

Sorry to hear about your daughter's arm getting worse! definitely keep looking for a lawyer, and take pictures of the everyday. Make sure that the camera has the date set to appear in the pictures. Let me know what the doctor says. Also seems you need to adjust your options to be able to receive messages. I very nice moderator sent me a message Cheack out your options and we can do it. Take care and keep me posted. Gotta get back to work

Jonnstar,

Thanks for the tip. I will dscuss it with my doctor for next time. At least they did pump me up with Benadryl before the Iron and it knocked me out! lol. still have body aches a week after but nothing I can't tolerate. I am however more fatigued than ever! I thought I was supposed to feel better, but not yet. I guess it takes time.
Thanks for the tip

Last edited by altaztaz; 05-24-2010 at 04:48 AM. Reason: oops

 
Old 05-24-2010, 05:04 AM   #15
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Re: Dextran infusion concerned first timer

Are you taking a daily multivitamin? Once the iron hist your body, and it madly starts making blood cells, you can use up a lot of folate, B12 etc.

A daily Centrum tablet might be a good idea while this is going on?

 
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