Ok so since I have quite a few of you asking Im going to make a post answering all the questions that you all asked that way everyone can see everybodys questions and learn even more =) If I do not know the answer I will
1. Ask M
2. Ask Dr. Sindel (yes we talk through e mail daily lol)
3. Tell you I dont know. I will NEVER tell you something I dont personally know or have not been told by someone trustworty and cf smart.
This is a long post but you asked so I answered =)
1. Did it hurt getting the port put in?
Michael says no, he said its was much less painful than getting stuck in the arm or having a PICC line put in. He has had 2 and does not remember the 1st 1 but says the 2nd did not hurt at all.
2 other cfers agree it did not hurt esp. compared to sinus surgery and other cf procedures.
I asked them to rate the pain on a scale of 1-10.. 1 being the least amout of pain and 10 being the most.
Michael- gave the surgery its self a 2 but he said getting stuck the first 3 times after surgery was a 4.
CFer 2- surgery was a 1.. getting stuck was a 3
CFer 3- surgery was a 2 getting stuck was a 4
2. Is that a scar I see where they put the port in?
Yes. 1st port the scar was much much smaller but when they take out a port they have to make a larger cut leaving a larger scar. Some of our cf friends have much smaller scars and some have larger scars..guess it depends on how good your doctor is.
3. Why do a port in that spot?
The intravascular device in inserted in a vein (usually the jugular vein or subclavian vein) and tunneled under the skin of the chest wall. There, a small device is inserted and connected to the venous line.
If you dont not have a preference thats where they reccommend it. In this spot (upper chest) they are able to run the line under the collar bone and in to a main vein. You can pretty much have it where ever you want it as long as it can run into a good vein.
Alot of our female cf friends get them put much higher or in the side below the bra area. They say it dont get in the way of the ladies and they can cover it in a bathing suite.
3.a Is there a certain reason why they don't do the iv in the arm?
You can do it in the arm but theres a line that runs off of the port and into a vein (how the med gets in) and if you put it in your arm that line is just under the skin.. making it visible (and sometimes tender per cf patient)
4. Does it hurt when the needle goes in or comes out?
M says the first few times he got stuck it hurt ( level 4 on our scale) but it has never hurt coming out.
When you get accessed your nurse or doctor will give you some stuff called "Emla Cream" and you take that and rub it on and around the skin where your port is. Its just like a lotion but it numbs the skin so you dont feel the stick at all. All of the cfers we know dont even use the cream b/c they all say that they dont feel getting stuck. According to Dr. Sindel after you get stuck a few times the skin becomes dead directly over the port which is why it dont hurt.
5. Can you take a picture of the whole thing, the whole IV line and what it is hooked up to?
I will put these pics at the bottom of the entry =)
6. How often do you need the IV? Only when he is sick or every so often?
Only when theres a infection in the lungs/whatever organ that cant be cured with oral antibiotics.
7. Why did he have to get it at such a young age?
When M was little he was very very very sick and was in the hosp. 8-10 a year and his mom said he was getting poked so much that all the veins were rolling.. including the ones in his feet and the top of his head. She told me it got to the point where they would have to tie him to the bed to try and poke him =( so Sindel thought a port would be much easier.
8. How do they do the surgery?
All I know about this is what the doctor told me when he had the 2nd one put in.. so heres the little I know.
Its usually performed under sedation or general anesthetic, it takes about a hour and its out patient. Sorry for the lack of knowledge here
9. Is it hard to care for? and what are the rules for maintaing and caring for it?
Well it depends really Ill do a break down of the different care for it.
Regular everyday care is simple.. when you are not accessed theres no care or special need for anything EXCEPT you should get it flushed monthly to keep the vein open and blood flowing. If you dont flush it on a semi regular basis blood can clot in the line. We personally go with monthly but some cfers do it every 3 months.
When you get it flushed you can either
A. go to a home health place, the access you and push a vile of saline through followed by heaprin or
B. You can do the same steps at home yourself.
General rules and care care is a bit more detailed.
1. Always use aseptic technique when handling the port, giving medication or taking blood samples.
2. Only access the port when strictly necessary for treatment - the less the line is handled, the less there is an infection risk.
3. Only use the correct access needles. Each cfer has a preference M's is a 3/4 inch gripper.
4.Never access the port unless you have been shown how.
5. Always flush with saline in between (SASH: saline, administer medication, saline, heparin).
6.Always use a 10ml or larger syringe - smaller syringes exert high pressures and risk damaging the line. Do not exceed a pressure of 40 psi.
Accessing care/rules... This is directly off a sheet from the home health place trying to get me to access him
1. Always access the port at an angle of 90 degrees to the septum.
2. Insert the needle steadily until you feel the bottom of the port.
3. Avoid excessive pressure on the needle once it has reached the bottom of the port.
4. Needle length - should be long enough to reach the bottom of the port when inserted. When using the GRIPPER needle or the winged infusion set, the needle hub should be flush against the skin surface.
10.Can you have blood work done from your port?
Certain test can not be pulled if you are having iv's run in due to the iv meds giving a false reading. This has only been the case 2 times with M and they were both test to see how thick his blood was for a sinus surgery ( some of his meds thin his blood and have to be stopped before a major surgery )
11. How do you draw blood for a port?
I personally have not ever drawn blood from his port but I know a little from watching and asking 324321 questions that you have to
1. Withdraw at least 5mls of blood and discard. then draw the desired amount of blood for whatever..
2. Immediately flush the system with 20mls of 0.9% saline.
3. then push in 5mls of heparin.
12. What kind of complications can you have?
These are the only ones I know of...There is more Im sure but like I said these are just the ones I know about.. Michael has not had any of these and only 2 out of the 15-20 we know have had any trouble.
1. Port becomes old and stops returning blood. A good taken care of port can last 10-13 years.
2. Port can be damaged in a injury ( sport )
4. Catheter/line disconnection
13. How often do you change the needle and tape?
Needles should be changed every 7 days. However, there is some that say it is safe to leave needles in for 2 weeks without changing although any studies you look up will tell you this resulted in a significantly higher incidence of port infections.
change the dressing whenever it is soiled, damp or loose.
14. Why is a port a good idea?
Well for M & I we like it because fewer pokes can mean fewer breaks in the
skin for germs to enter, so less chance of infection. It also gives M freedom to do alot of stuff at home and M says there is no pain unlike picc lines and regular iv access.
15. Can you see it when its not accessed?
You just see a small lump, like a bottle cap under the skin.
However the smaller you are ( thin not age ) and where you have it placed may make it more/less noticable.
16. What are all the parts in a port made of, called how do they go in and what do they do?
Again this is just a little I know and Im sure theres more to it..
The main part of the Port-a-Cath is called theport or reservoir. It may be made of stainless
steel, titanium, or plastic. The surgeon puts it in, under the skin.
The port is connected to a tube (catheter)then the surgeon threads this tube through a large vein ( A large vein can handle medicines and fluids which may bother a small vein.)
17. Can you do everything normal when it has a needle in it?
Pretty much within reason. We dont stop our daily things but we are careful when M is accessed. He dont go to karate or play football but he still goes out and works on his car and stuff like that.
The only thing I know that you for sure CAN NOT do while you are accessed is get the area wet. You can shower and stuff as long as you have tegaderm over it but you are not suppost to submerge the site into water if its uncovered. Pretty much keep the tegaderm on and sealed tight.. dont do anything that could rip the line out ( rough housing/contact sports) and go on about your day.
18. How do you de access?
EKKK Like I said before I can and have done this but I dont like to.
Anyway the proper steps to de accessing are
1. Anchor port between two fingers.
2.Pull needle straight out and apply pressure with a gauze if it bleeds (m's dont bleed nor do any of the other cfers I know).
3.Dispose of needle.
Michael just so happens to be getting an iv right now so heres some pics.
I know some of the captions were un necessary but Im ocd and detailed so smile and keep reading =P
The Beginning.. Hanging the iv
Down the line.. The little white thing is the piece used for controlling the rate of the med. it has a knob that you slide up to make it go faster and down to go slower.
More down the line. The 1st white piece is a "clamp" you use it to cut off flow of the meds if you need to cut it off in a hurry.
The second white circle is a "dialaflow" its does the same thing as the pice with the knob.. you dont get dialaflows unless you out right ask for them. They make home iv's easier b/c with the dialaflow you set the rate (example lets say M has a bag of meds thats 100 ml I could set the dilaflow to 100 and that would make the med go in over the next 100 mins.) Normally it tells you how fast it should go in. With the piece with a knob you just kinda guess on the speed of the drip ( called gravity hanging ) Its always better to be safe and ask for a dilaflow b/c you dont ever want to let the meds go in to fast and burn the vein.
The full picture =)
Hope this was helpful!! Let me know if you have any more ?'s and I will try my best!