Thalassemia Patients and Friends
Discussion Forums => General Chatter => Topic started by: cherieann on July 17, 2008, 09:15:58 PM
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Hi everyone
Just wanted to know if anyone has a portacath that they use for chelation.
We have noticed over the years that having the desferal going through it irritates the area but also it gets infected more.
Now to ease the port I go subcut except when due for a transfusion. That's when my port is accessed and the desferal goes that way for the week.
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hi cherie
yes, i have a port.
its my second. the first they explant after 3 or 4 years,
because of an infect....
this one i have since 4 or 5 years.
and i try to make only chelation with it...
no transfusions or anything else....
and its helpfully....
i came down from over 13.000 ferritin to last week
3.855
i think its the best way to fight such a strong battle like
mine (i mean the high ferritin-level)
my doc and me think now about continu with exjade...
but i didnt explane my port if its possible.
panos
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This is my third port. My first one kept gettin infected and was two months away from being 10 years old. My second port was only a month old and this one is about 7 to 8 years old.
My port is used for transfusions as my veins are no good. But I love having my port it makes it so much easier.
My ferritins aren't great they are in the 4,000 but I keep trying. At the moment my daily dose is 4gram a day. One day hopefully I can get low results like you :biggrin
I can't get exjade at the moment as the govt would subsidise it so I keep going with my port and subcuts.
Does your port cause you grief with the desferal?
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Here's a link to the old MSN Groups - Port Vs Needles
http://groups.msn.com/ThalassemiaPatientsandFriends/general.msnw?action=get_message&mview=0&ID_Message=1515&LastModified=4675487081142849608
this was posted almost 4 years ago.
Nothing has changed, but I'm up to Port # 5.
Left Leg this time, around the groin area
Just call me ET
EXTRA TESTICAL
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can anybuddy tell me wat is this ....?.
is this a sort of needle ...?
or something like a cut in skin to infuse desferal ??..
does it make any difficulty in taking bath ?....
n how does it get infected ?....
nothing more to ask
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Yes,
Ports have to be implanted by minor surgery. It then provides an access point to which you can insert needles painlessly.
It requires some maintenance in terms of flushing it so that blood does not clot in it and bacteria does not start to cultivate and eventually enter the body.
It's not suitable for hot climates as sweat may infect it (unless you keep cool and clean)
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Here's a link to the old MSN Groups - Port Vs Needles
http://groups.msn.com/ThalassemiaPatientsandFriends/general.msnw?action=get_message&mview=0&ID_Message=1515&LastModified=4675487081142849608
this was posted almost 4 years ago.
Nothing has changed, but I'm up to Port # 5.
Left Leg this time, around the groin area
Just call me ET
EXTRA TESTICAL
ET :rotfl I like that.
I was told that I couldn't have mine placed further than my chest as they needed to attach to the ribcage.
I'm so envious as that would make it so much easier for me as I access my port myself. I have to use a mirror to locate the center. :wink
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ET kills me. :rotfl I can't wait to finally meet him in Singapore. We've been cracking each other up for years and it's going to be great to finally meet my bro. And as far as this thread, Aston Dialo is the voice of experience x 5. AD, hopefully you won't land on this port when you wipe out on your bike. Ouch! That had to hurt.
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I found that the area on the side of the rib cage is more sensitive..
You felt the needle piercing the skin everytime - without fail.
But with the other ports, after having a mark on the skin (ie a Bull's eye) bit like X marks the spot from the number of needlesticks, you can't feel the piercing of the skin from the needle.
(But there's always emla cream you could use, which is a local anaesthetic cream which numbs the skin)
http://www1.astrazeneca-us.com/pi/EMLA.pdf
http://www.skinsite.com/info_emla_cream.htm
http://www.smiths-medical.com/catalog/implantable-ports/
http://www.cookmedical.com/di/content/mmedia/FM-753.pdf
http://www.cookmedical.com/di/content/mmedia/FM-1270-L.pdf
Looking forward to Singapore too Big Bro
:biggrin
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I Lost count..
It's actually my 6th one...
Hmmm Sixth Sense
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I use the emla cream only when my site is tender. :mad
I must say that I'm now much happier with my port as I am the main accessor and only two nurses administer it when there are problems. It has been 20 years since I got my first port and I have less problems with it now. Some of my issues with the port was new nurses learning how to access the port. They were pretty hard on my ribcage when it came time to take out the needle and I didn't like some of their techniques. I was always scare of getting infections.
I have been doing my own port now for 14 years and have only had two infections and both caused by pnemonia so as long as I keep on top of my health issues and access by protocol, I shouldn't have any problems. :biggrin
I do love my port though, it's much better than being pricked in the veins at each transfusion.
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Yeah, I was always reluctant in letting a nurse without any experience to needle my port, or de-needling my port.
If the sterile procedure is followed in needling a port, then the risk of getting an infection is lowered.
I remember going to the ER for one of my kidney stone episodes, and they wanted to get some bloods taken.
I told the Dr (must've been a med student) that I had a port for access.
He said, oh, ok cool.
He came back with a 19G needle and a 20mL syringe, and some large alcohol swabs.
I said you idiot, you needle my port with that, and you'll never hear the end of this.
I said, to access my port, it's gotta be done in a sterile procedure.
Hey Cherieann, What brand do you use?
he he he
Mine's a Vital-Port (Cook Vascular Incorporated)
They tend to use a 22G x 3/4" Gripper
But they don’t always have 3/4" so they have to use the next size up = 1”, which sticks out a mile.
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Yeah I've a few horror stories too and l've had a nurse come out at me with a normal needle and syringe. That was after I got into a heated discussion with an emergency nurse explaining that I have a port and no they can't have my veins, they are reserved for my crossmatches. In the end I let her.
Needless to say she kept missing my veins, :mad a couple of veins collasped, :pissedoff and I had bruises over both arms. :now The next morning I made my specialist write a letter that explains me and that they have to call a haematology nurse if I come into emergency to access my port. :biggrin
Good question about my port. What I can remember is that its base is made from titanium and that it is a single barrel venous access port. I've used the gripper needle too but prefer the .9mm x 13mm (20g). The other size is like you say sticks out a mile and the gripper needle tends to pull on my skin over the week period. The nurses say that my port jumps out says hello when I lie down.
It says hello even if I'm standing. :rotfl
You've probably have got the latest port on the market. :wink
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The Med student was actually serious about accessing my port with the 19G needle & 20ml syringe.
Are you on Warfarin?
My port is about a year old now...
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thanx :biggrin
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The Med student was actually serious about accessing my port with the 19G needle & 20ml syringe.
Are you on Warfarin?
My port is about a year old now...
So was the nurse.
No I'm not on Wafarin. I was on that only once when they found a clot in between my lungs and heart. That was six years ago.
I use 10ml heparanised saline and then 10 ml heparin under pressure to lock the port so I don't have problems with the patiency. The protocol has changed now where you don't have to flush with heparinised saline but I prefer it so I continue with it :biggrin
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Yeah I get hep saline everytime I use my port.
Some nurses have different techniques in de-needling the port.
Some, they inject the hep saline soltuion into port, than take needle out, while others inject the solution, and towards the last couple of ml's they pull the needle out to have a positive pressure Hep lock.
I prefer this method, but because of the higher risk of needlestick injuries, nurses tend to use the first method, cos in the 2nd method I mentioned, you really need 3 hands to remove needle from port.
Injecting the hep saline, holding the port down and pulling needle out.
I am on warfarin, I have found that in the past, a couple of my ports have clotted.
They say if you don't use your port on a regular bases, it is recomemended that you get it flushed with hep saline solution, every 3 months.
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AD, hopefully you won't land on this port when you wipe out on your bike. Ouch! That had to hurt.
Oh yeah I forgot about that..he he he
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Wow AD
Your techniques are so different than here.
Here in NZ, the port must be locked under positive pressure.
You are right about more hands needed so there are two ways of doing it.
1st way is the nurse holds down the port and pulls needle out while patient or another nurse pushes lock in.
2nd way is if you have to do it yourself, you push lock through while at the same time turning the 3 way tap to off. This causes the positive pressure and then you can just pull out the needle without any problems. The second way took me awhile to master but it is so much easier and I don't have to wait for my husband to come home and do it. :biggrin
Do you administer your port yourself?
I'm glad that my specialist let me learn as it gives me control and I feel more of a participator than an object.
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Na,
I try avoid using it as much as I can.
The more times it gets needled, the more risk of an infection.
I only use the port If I have more than 1 pack, and also if the nurses are busy, and or If I couldn't be bothered waiting to get my port needled, I just get them to try my veins.
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My veins are only used for monthly blood tests. Too much scarring.
I'm pretty lucky with infections because with me handling it, theres less chance of cross contamination. The nurses say that I can't cross contaminate myself with my own skin cells.
How often do you get transfusions?
You say that sometimes you only get 1 bag?
If I'm lucky it's two bags but mostly it's 3 bags and thats 6 weekly unless I've been sick then I get transfused earlier.
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I get transfused every fortnight.
I know it's more of a hassle, but beats spending a hole day in hospital on your day off.
My veins used to be really bad, I used to use my port for blood tests and for transfusions.
I used to go in every month, having 3 or 4 packs (most of the time was 4 packs)
But it's not good for the heart either to have such a large volume of fluid in 1 hit.
Not that I have any heart problems, (Knock on wood)
My best run is having a hatrick - 1pack on 3 different admissions = total of 3 packs in 6 weeks (1 pack everytime Ive been in)
I normally have 1 or 2 packs each time I have trans - Average 2-4 packs a month
My trigger Hb is 105.
> 105 = 1 pack
< 105 = 2 packs
< 95 = 3 packs
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My agreement with the specialist is <99 is three packs
>100 is two packs
I try to last 6 weeks as the less transfusion the more chance I have of knocking some of my ferritin down.
You are right about the fluid and heart but with my sotalol, my heart has been pretty good letely (knock on wood) so I'm happier to go 6 weekly when I can.
I tell my nurses that I love them but if I can stay away I will. :biggrin
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I tell my nurses that I love them but if I can stay away I will. :biggrin
:rotfl Ha Ha Ha
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I knew you would appreciate that :biggrin
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Hey everyone. I just got out of the hospital due to a port infection. :'( The one that I just removed was the second port I've had in my lifetime. The first one lasted over 10 years and the 2nd one lasted about 5 years. I never had an infection with the first one. The second one got infected because somehow, there was a crack in the tubing of the port. With the first one, I only used it for blood transfusion every 4 weeks. And when I was in the hospital sick or whatnot. Same with the second port, expect for the last 2 months, I've been using it to infuse desferal 5 nights a week. As of right now, the port was removed and I don't have one in me now. They doctors are letting the wound heal and to make sure the infection is completely gone. Once the wound is heeled, I'm getting another surgery to put in a new port. Before reading this post, I was so upset that my second port went bad so quickly. But as I've been told and read, 5 years is quite a long time for a port to go without an infection, etc. But compared to my first port, I felt this second one went so soon. So I guess I've been quite fortunate when it came to my ports. Wish me luck on my third port! As much of a pain in the behind a port is when it comes to surgeries and infections, I can't imagine not having one..
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:agree :exactly
I am lost without mine.
You don't need luck... you are luck :biggrin
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Wishing you all the best
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WOW..
10 years or 5 years..You had a good run.
My best is 5 years, and the worst has been less than a week - perhaps my body rejected it.
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Never mind AD,
Maybe it was the brand :wink
The next port might out last us all. :biggrin
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Operation:
first surgeon I saw was a old men who was very rude (I didnt even know what a port was)
second surgeon was a young lady i met the day before (she said: left side of your bod; unvisible)
at operation: no idea who did it, no idea which type
infection, all the time the hospital. big ugly scar for a baby porth :wah
they told me it would not be able to move :huh
Nurses and working sterile?
They don't exist
My mother is the only one who is allowed to do everything.
Untill six weeks ago
The porth wasn't working. Doc said it was dead, but there was no date yet.
Two fridays ago it was time to flush it. It works in one try :rolleyes
Nevertheless, I decided that I will life without one.
I can't take desferal since I am deadly allergic. 3 years back I almost died at home. I couldn't breath.
At the end i'd 5x24hours infusion with easypumps, do you know them? I love them!
Yes, the area is red often.
Port and I are a couple since 5 years, but maybe 6. It's time to ask for a divorce :biggrin
My veins had peace for 5 years, so I hope they recovered a bit. I'd so much scar tissue up my hands/wrist that it wasn't possible anymore and port was better to use at home.
Dore
p.s, I always use emla!