Ports

I know this has been discussed before but it appears the msn link that many refer to when I search for past posts is no longer in existence so I hope you won't mind repeating yourselves.

Last week my husband and I brought home our daughter that we adopted from India.  She is almost 2 and she has beta thal major.  She is just an amazing child, so strong and has already brought so much joy to our lives.  We are working with 2 hematologists - Dr. Thompson from Chicago and a local pediatric hematologist who will follow the recommendations of Dr. Thompson because Chicago is a bit of a distance from our home.  We met with the local hematologist early this week and he would like us to consider a port for her transfusions.  I'm going to discuss this with Dr. Thompson at an upcoming appointment but I'm just trying to get some input.  My daughter is terrified of doctors - she screamed when the doctor only wanted to feel her belly to feel her spleen. I can only imagine how she will do when they transfuse her.  The doctor said they usually put them in the chest - my husband is concerned about scarring.  Those with young children, do they have a port or can they tolerate the other way?  I appreciate any input. 

Also, I have a list of questions to take to see Dr. Thompson - is there anything anyone can recommend that I make sure to discuss?  I really want to discuss chelation and nutrition... anything else you can suggest?  I've been reading this forum for over a year and it has been the source of so much information.  I cannot thank you all enough for your willingness to share your stories. 

There is a topic we discussed earlier related to ports in Infants

http://www.thalassemiapatientsandfriends.com/index.php?topic=455.0

Thank you!

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.

A port for transfusion?

I have been transfused since I was 8 months old and I am now 48 but never with a port. I find it apalling. Sorry for being harsh on this- Andy is more flexible I see - but I find it too much. Your daughter will get used to transfusions and chelation as we all did.

Lena.

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

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.

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           

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

Keep reading AND keep posting!!!

Warmest wishes, Dore

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.

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!!!

Yes Dore. One month after Lisa died, my wife was diagnosed with breast cancer. It was a very difficult year in many ways and there was a point when this group was almost absconded by someone taking advantage of the devastated emotional state I found myself in, but in the end, our group survived and with the blessings of Lisa's mom, we continued and grew. My wife was told about the harshness of chemo, but with the supplement regime my wife took during the chemo, much was avoided. And I will add this. Wheatgrass was a key to her health during the chemo. My wife did very well and her Hb never dropped below 11 and there was no loss of bone mass from the chemo. Today, my wife is well and we lived through a couple more scares this year, but she is now a proud 5 year survivor. 

Dear Andy,

So glad to know that your wife is well. She must be a pillar of inspiration and strength for you just as you must be for her.
Though i do not know her please send her my love and let her know that i will remember her in my prayers.

Emby

Yes Dore. One month after Lisa died, my wife was diagnosed with breast cancer. It was a very difficult year in many ways and there was a point when this group was almost absconded by someone taking advantage of the devastated emotional state I found myself in, but in the end, our group survived and with the blessings of Lisa's mom, we continued and grew. My wife was told about the harshness of chemo, but with the supplement regime my wife took during the chemo, much was avoided. And I will add this. Wheatgrass was a key to her health during the chemo. My wife did very well and her Hb never dropped below 11 and there was no loss of bone mass from the chemo. Today, my wife is well and we lived through a couple more scares this year, but she is now a proud 5 year survivor. 

 

So this Pink ribbon month is very special for you. It scary me how many woman get breast cancer, yikes. (ps men can have it too)

For your wife:
 

Dore

Thank you so much for taking time to respond.  You all confirmed some of my husband's and my thoughts about the port.  I feel like I can go into this appointment with a little more confidence about our desires for our daughter. 

She just got discharged from the hospital this afternoon.  She was in 3 days because of a nasty viral infection that resulted in difficulty breathing.  They had to do a bunch of blood work and she put up a pretty good fight while they tried to find the veins... the doctor's told me they'd never seen one this little and sick who's so strong!  I was almost proud of her for making them work so hard.  She's got a fighter's spirit and that will take her far in this life. 

I am sorry to read about your daughter hospital stay. I hope se is doing better now.