Portacaths

Hello folks and I hope 2009 has started out well for everyone.

I've had a portacath for nearly a couple of years now.  I kept putting off having one installed, but inevitable had to happen.  I still have'nt got use to it!  I can never sleep on that particular side.

Just enquiring how long do these things last and what are the say symptoms that they are nearing the end of their use.  Reason being, a number of occassions its take about 3 attempts and the last time was quite bad as the nurse missed the target and the pain was excrutiating!    The area became very inflammed and sent my mind back to the bad old days of numerous attempts on my veins.   

Also I've heard that MRI scans are quite impractical because of portacaths due to the metal element.  If that true, how then can the ferritin be checked on the heart.

Many thanks,


Nick

 I had a rontgen scan after my port (I call it doggy) was placed. Where is yours located? Mine is located under my left armpit. Completely invisible when you do not know I got one. It is good that I dont like swimming.
I know what you mean. My mother is the one who pricks my infusion. She has been teach by daycare here in the netherlands and at home.
It is a pity. I can not have a mri scan as well. I cant remember it perfectly, but mine was totally wrong. That hospital did not even note which one was give to me! Everything went wrong during and after that operation! The only good thing is the place of my doggy. From my opinion can some have an mri scan, the scan can be a bit affected but not totally unmeasure.
Mine had a few times a blockage, but is working very well at the moment. The hospital which placed it said that it would be out of order when the membrane is broken. My new doctor told me recently that those things only get unusable because of a blockage. My skin has be once very red and itching for weeks. I was given a special antibiotics cream which helped me a lot. You do also use Emla before they prick an infusion? I love EMLA ;)

I hope I did answer your questions correctly,

Dore
p.s. My doggy celebrated his 5th birthday in October. How old is yours?

Hi Nick
I have a portacath that is located just under my left breast. (you can tell a male installed it)hehehe
My first one lasted 1 month short of ten years due to numerous infections.
2 port lasted 1 month - installed too soon after clearing infections.
Now I am on number 3 and it will be celebrating its tenth birthday this year hehehe.
I read both yours and Peartree's comments re MRI scans.
I have had  Xrays, CT scans and MRI numerous times with no problems at all.
The specialists told me that the port will outlast me because of the amount of needle pricks the membrane could take. My skin gets red at times due to the chelation if I want to give my legs a rest. I was told that this is normal because the desferal irritates.
I do my own port and my husband is my back up if I can't do it.
As long as you look after it and your body, you shouldn't have any problems.
I only lost my first two because of pnenumonia and chest infections. Didn't rest when I should have.
Good luck with your ports and Happy Port Birthday Peartree

Many thanks for your answer Dore.  Luckily my situation does not sound as bad as yours and I only have it done for transfusion only as I’m taking exjade (thank god)

Mine’s placed on my right side just below the shoulder and been there for nearly 2 years.  Not sure why they placed it there really.  I was taking ampitop cream for the first 6 months but after that there was no sensation in the port area so there was no need for the cream, its just bad luck the nurse missed!  Nice take on giving your port a name, not sure what I would call it. Is that doggy years (1 year = 7 years) or human years, it would be nice if its doggy years, hehe .  Wish it a belated Happy Birthday from me.

Nick

Hi Cherieann, thanks for your answer. 

Its sounds like I’m quite lucky as I never got the chance to do Desferel through a port, although my arms and stomach took a battering over the years. 

Luckily going on to exjade has prevented this option so far so good, as it chelating well.  I was worried about MRI scans, but your answer has put me at ease for the time being, until the next problem that is!!!  I think like you say looking after the port and yourself is the best option and maybe I’ll beat your all-time record!! 

Many thanks and take care of yourself and your husband.


Nick

Ha, I remember it clever now. I can not do a MRI scan because they dont know the type of my porth. All they know is that it is a strange oldie and that I can not have a mri-scan. Silly hospital and silly docs. How can you forget to note which port you give to a patient?

Name:
port-a-cath = cath = cat = I love cats; I dont like dogs a lot = dog = handy name = doggy    In doggy years: 35yr

Owh, I always use Emla. I have experience how it feels without, so Emla is my best mate ;) (In nov 2006 (?) I stopped with the desferal infusion. I am taking Exjade since Sep 2008. How is your ferritin? Mine is still 2400. Btw where are you from?

Cherieann, a few weeks for the op we met the male doc. But two hours before the op there was a lady doc at my bed who told me that she refused to place it there and that she would place it under my armpit..... I met the male doc only for 5 min and he was one of the most rude docs I ever had. I had no idea what a port was and I was so scared, but he did not want to show one....

Hello again Dore.

Hey how come you don't like dogs, is'nt that one in your picture?  To be honest I'm not a fan of dogs. 

Good to see that you've stopped with exjade - seems to be a growing trend.  I was on desferel from the time I was eight years old up till June 2007.  My ferritin has always been quite good, my doctors always keep an eye on it - apart from when I was in my teenage years and it went up to over 10,000.  I tried to use the pump does'nt work excuse (sometime it did'nt!), but my haematologist put the fear of god into me by stating that if I continued that way then the consequences would be very bad - in other words Death!!!!  That soon put me in my place!!

My last ferritin was 541 and I take 625mg of exjade daily.  Its sometimes changed if it goes above a certain level but at the moment everything seems to be going well.  By the way I'm from the south west of england but have lived for a time in london.

Take care,


Nick

Nick,

Your ferritin is really good  I just wanted to appreciate you on working so hard,from 10'000 to 541,that's really amazing,i wonder when my daughter's ferritin will be that low  .

Great work Nick .

Zaini.

Nick,

That is great!  I am also waiting for my son's ferritin to drop that low.  I wish you continued luck with your chelation! 

Sharmin

Hey Nick,

We all wait to have a ferritin like that  I give myself two (more) years to reach the 1000. But I am just like Zaini. I take 1250mg of Exjade, but increase the dose with 125mg every two weeks. Saturday I will do that.

Hahaha, yes I forgot about the picture. The lady is in the picture is Shakira, not me. She probably like dogs. I dont know of it makes sense (I dont think so) when I say that Exjade is like that dog for me? I am ofcourse a great fan of  Shaki 
How long took it you to go from 10,000 to 541?

I always people talking about their pump, but the last 5 year I have used an easypump. I love them. They are more balloons.

Dore
p.s. I never visit England.....or wait the boat stops in Newcastle. Is that England? And I have been once in Edingburgh for a week; to learn English, but I was too shy to say a word.    I know England (or UK) only from the detectives I have watched. I love English detectives!!!

Thanks Sharmin and Zaini for your comments, they're greatly appreciated. 

Nick

Hi Dore,

I thought I somehow recognised that lovely lady in the picture.  She not a thal is she?  Mind you she would probably need a blood transfusion every week for all the energy she wastes shaking her hips!!

It took me a very long time to get my ferritin down to a level below 1000 from that high level - probably around 15 years.  It had been consistently around 1000 for about 5 years or so before going onto the exjade. 

Nick

P.S.  Yes Newcastle is in England.  Although the accent can be quite annoying and in parts of Scotland you are lucky to understand what they are talking about!!

I love your humor. You are letting me smile again. Thank you!  I feel sad since friday when I had the same annoying fe results again. I have an appointment with my doc 12th. The last time (nov) he told me that he was not happy about my fe...... Friday I realize that I started this intensive chelation therapy 5.5 years ago...pff  The question what is left: how long are you taking Exjade?
It is really funny   She is taking so much time for make the new album, that we should offer her a blood transfusion, haha!! (C. Ahern has written a book about a woman who gets a transfusion and suddenly remember lots of things; so maybe also musical advise. I think we all wonder sometimes who the donor was. )
I hope my doggy will reach his 10th Bday too!

Adíos, Dore
p.s. Hmmmm I think they speak with a scottish accent in Taggart? I cant come up the other name of a detective. Scottish is funny  In Newcastle I only talked with people from Birmingham btw..

Dore ,

You have read that book by C.Ahern? i loved it,have you read the new one? "The Gift" ?

Zaini.

No, I have not read it. Umair told me about the book. I knew that you suggested that book. I bought it at the English bookstore Waterstones in Amsterdam, because the Dutch version took ages. But I have not read it yet. It still saved money because English books are cheaper than Dutch books. She has also written 'P.S. I love you', isn't it? I only saw the movie, but i found it a bit too sweet. But you have my word, I will read it so soon as I have the other three books out.

Dore
p.s. I will send you my opinion about 'Thank you of the memories' by email.