Discussion Forums > Thalassemia Major

Ports

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Ironman:
I have had 2 ports over the past 2 years.

They both got infected within 2 months and had to be removed.

Quite funny, looking back at it now :D

Andy Battaglia:
I have known some people like Aston Dialo in our group who have really needed ports but have had to deal with the complications and I believe he is now on his 6th or 7th port, but I really think that ports are often recommended for reasons that have all to do with making it easier on hospital staff and are not really in the interests of the patient. If they take the time to find a vein, there is no need for a port. Always stay in charge of treatment decisions. It is the patient's absolute right.

Emby:
Dear germ79,

I have 2 boys with thal major.  I remember when my eldest was very young, being canulated. He too did not like being checked over by  all these strange doctors.  He used cry sooo much that it was difficult for him to catch his breath...he was completely wet with perspiration and they would not be able to cannulate him till about 6th/7th attempt..perhaps more.
I used to feel so distressed to see him like this but there was at no point when I even considered a port.  I feel Andy is right about the doctors wanting it to be more easier for them rather than your daughter. A port can become infected causing more distress compared to one time every 3-4 weeks of trying to canulate your daughter.
I would say that do not let your daughter see your distress.  You need to be her strength and stay calm. Although I was crying inside every second of my sons discomfort I never let him see it.  I used to hold him close to myself to make him feel secure when the doctors cannulated him.  Eventually he trusted the doctor enough to know that they were not hurting him.  There used to be a Play Specialist present all the time to distract him but we found that he felt more at ease when he actually watched the doctors inserting the needle!
I think it is also important to have the same person to cannulate your child so that she learns to trust them and also because they would know the best place to cannulate where as different doctors would not necessarily know this.  You would also as a parent learn where the best place is.  With our eldest they used the same place for almost 9 years where as different doctors would assume that would not be the best site because it looked a bit scarred but it always proved to be the best vein.
It would get easier for her and for you.

Emby           

Dori:
Dear germ79,

I have a port-a-cath. Mine just turned 6 a few weeks back. Normally they don't get so old. Mine is in such good condition, because my mother always access me.
I don't think a port only for blood transfusions is a good idea. Although I understand your daughter's fear, because I was little once too. I really should recommend you to use numbing cream called Emla always and forever!!!
Be sure that only a well educationated and real doc does the needle inserting stuff!!! I don't want your daughter through such hell as I have.
My poarents has been chosen to use my feet for 4 or 6 years. It was very painful - we didn't use Emla at that time - but the veins in my arms and hands recover.

I'm glad you learnt so much from this forum and us. Also I've been here now for a year :wub

Keep reading AND keep posting!!!

Warmest wishes, Dore

Dori:

--- Quote from: Andy on October 24, 2009, 04:15:24 AM ---I would be very hesitant to have a port put in your child, and I did convince my wife to not get one for her chemo treatments 5 years ago, even though her hematologist was very much in favor of installing one. I really feel it is done more for the convenience of the hospitals than it is for the needs of the patient, but I do have to say that this is strictly my opinion on the matter.

--- End quote ---

Be careful Andy. There are a lots of chemo's now which does something very painful with the veins and skin. Therefore they get a port. I get my treatment always in the chemo room. I think that's the reason why some has and some don't have one in our chemo room. But, most ports are removed within a month after treatment has been finished.

I didn't know you're wife underwent chemo. I hope she's doing well know. I've faced 2 times cancer in my direct family, but chemo was never an option.

I would say no port. I am a bit scared now for needles, and I never really was!!! :-\

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