Question for those with ports or considering a port

mmmtat

New member
I would not have a port unless I accessed myself. I absolutely must have the option to access myself. I could give a crap about how it looks.
 

mmmtat

New member
I would not have a port unless I accessed myself. I absolutely must have the option to access myself. I could give a crap about how it looks.
 

kayers3

New member
My first port was actually in my arm. I had it for nearly ten years before it literally started to disintegrate. I actually still have a piece of it that is stuck in my arm. I now have one in my chest. I don't self access, but I do de-access. (Which I was able to do fine with the arm port) The biggest drawback to having it in the arm was that it moved a lot (I thought I was getting away from that with the new one being in my chest, but that is not the case) and that no one had ever seen an arm port before so there was some more difficulty with accessing it. Also I had to sit with my arm rotated funny so the nurses could get to it. The tubing needs an extension so you can do your own flushes, but it was definitely less noticeable when I had to have it accessed. That was a big selling point for me, since I had it placed around high school.

As far as the accessing it yourself...I imagine if you have a parent or spouse that can be shown how to hold it steady, you'd still be able to access it w/out needing a nurse to come out.
 

kayers3

New member
My first port was actually in my arm. I had it for nearly ten years before it literally started to disintegrate. I actually still have a piece of it that is stuck in my arm. I now have one in my chest. I don't self access, but I do de-access. (Which I was able to do fine with the arm port) The biggest drawback to having it in the arm was that it moved a lot (I thought I was getting away from that with the new one being in my chest, but that is not the case) and that no one had ever seen an arm port before so there was some more difficulty with accessing it. Also I had to sit with my arm rotated funny so the nurses could get to it. The tubing needs an extension so you can do your own flushes, but it was definitely less noticeable when I had to have it accessed. That was a big selling point for me, since I had it placed around high school.

As far as the accessing it yourself...I imagine if you have a parent or spouse that can be shown how to hold it steady, you'd still be able to access it w/out needing a nurse to come out.
 

rmotion

New member
Interesting, I have long thought of how to make a port more user/ patient friendly.
Good idea to get some market research from the specific end users.
I have a similar small port in the Right upper chest, it is hard to access even for the nurses due to the size.

It was placed with a small incision( this part is irrelevant to the patient, they're knocked out when it is put in most times. ) But this might be important to the radiologists.
THe current small port with a unweildy angled needle is in need of a revamp. If you build a better port....they will come.

I would focus on a specific target market - patients or radiologists.
I would design it for the "exact intended" purpose versus tweaking it to the "everything best purpose"
ie: easy patient self access chest port( ie Epass brand name) - just not try to hit on all points (asthetics etc).
Discrete is fine but being able to easily and safely self access is a patient benefit and saves insurance money so if you had a "system for self access" you would win on both fronts.

A self access on the arm could be easier but I would not want a port on my arm for mechanical reasons.
I would be afraid of lifting or moving wrong and yanking it out.
I would self access my port if I felt comfortable doing it. Educaton of the patient or parent would be key.

I have a small port, so they tell me, and sometimes the nurses have trouble lining up the needle, they are still convinced it hurts. Trust me after 40 arduous picc lines a port stick is nothing.
Small is good for asthetics but not utility, especially if you are focusing on easy access.
I would rather have a larger diameter port that did not stick up so much. Location for self access should be on the chest opposite handed of person.
The current system is a small port but requires a long deep needle - probably unnecessary.
A larger flater less deep needle is probably the way to go.

ie: My port is on the right side and I am right handed so that adds to the difficultly or ease of access if I was to do it myself.
Areas to address of concern with self access.
1. Germs getting into the site and thus the heart.
2. Access the port correctly otherwise if not it could damage it and need to get replaced.
3. If you were to have complications where it wouldnt flush or if you had other issues.

I think a system to access would be the easiest for patients, with instruction, a plastic guide that would line up the needle to the port. Remember it is a one person operation.
I would have the guide place over the port on the chest that holds it still and something that assures it lines up with the needle as opposed to a free stick approach to get the needle in.
I can help if you want I am an amature inventor, small business owner and marketing major and can offer some perspective on the port side and inventor side. feel free to email me.
 

rmotion

New member
Interesting, I have long thought of how to make a port more user/ patient friendly.
Good idea to get some market research from the specific end users.
I have a similar small port in the Right upper chest, it is hard to access even for the nurses due to the size.

It was placed with a small incision( this part is irrelevant to the patient, they're knocked out when it is put in most times. ) But this might be important to the radiologists.
THe current small port with a unweildy angled needle is in need of a revamp. If you build a better port....they will come.

I would focus on a specific target market - patients or radiologists.
I would design it for the "exact intended" purpose versus tweaking it to the "everything best purpose"
ie: easy patient self access chest port( ie Epass brand name) - just not try to hit on all points (asthetics etc).
Discrete is fine but being able to easily and safely self access is a patient benefit and saves insurance money so if you had a "system for self access" you would win on both fronts.

A self access on the arm could be easier but I would not want a port on my arm for mechanical reasons.
I would be afraid of lifting or moving wrong and yanking it out.
I would self access my port if I felt comfortable doing it. Educaton of the patient or parent would be key.

I have a small port, so they tell me, and sometimes the nurses have trouble lining up the needle, they are still convinced it hurts. Trust me after 40 arduous picc lines a port stick is nothing.
Small is good for asthetics but not utility, especially if you are focusing on easy access.
I would rather have a larger diameter port that did not stick up so much. Location for self access should be on the chest opposite handed of person.
The current system is a small port but requires a long deep needle - probably unnecessary.
A larger flater less deep needle is probably the way to go.

ie: My port is on the right side and I am right handed so that adds to the difficultly or ease of access if I was to do it myself.
Areas to address of concern with self access.
1. Germs getting into the site and thus the heart.
2. Access the port correctly otherwise if not it could damage it and need to get replaced.
3. If you were to have complications where it wouldnt flush or if you had other issues.

I think a system to access would be the easiest for patients, with instruction, a plastic guide that would line up the needle to the port. Remember it is a one person operation.
I would have the guide place over the port on the chest that holds it still and something that assures it lines up with the needle as opposed to a free stick approach to get the needle in.
I can help if you want I am an amature inventor, small business owner and marketing major and can offer some perspective on the port side and inventor side. feel free to email me.
 

Tisha

New member
I used to wear a port in my upper thigh (ages 14-18) which was fantastically convenient for taking care of self-medication (although I never accessed it) but dreadfully inconvenient because the area was painful and I couldn't wear jeans or participate in ball sports.

Now I have a port in my upper breast, in a place that falls right underneath the bra strap, which means I have to wear strapless bras when I have the needle and system on. And I cannot drive during that time either, because the car belt falls over the area. Inconvenient!

I have never accessed the port myself (here in Spain we go to the hospital every 7 days to change the needle and system, during an IV treatment) but it is very important for me to have clear visibility to clean it, change the adhesive, and handle the medication -- and upper chest is NOT a good place for that!

Another issue that is very important for me is that the shape of the port is rounded in a way that would prevent it from tearing the skin. After a few months in my leg, the skin tore open and I could see the port. That was rather traumatizing at age 14 (or any age), believe me! Then the port was moved a couple inches and this never happened again. But now on my chest, even though its a smaller brad port, I can feel its edges through the skin and I have to focus on thinking of something else or I would go mad with the impression and fear that the skin will tear again. So please design something with very curve edges!! No edges, please!!!

By the way, although upper chest is not a practical place, I would not choose upper arm because I really value independence (accessing it is not so crucial to me, but being able to change the adhesive without help, is!).

Keep us posted, and thanks so much for taking the time to ask us!
 

Tisha

New member
I used to wear a port in my upper thigh (ages 14-18) which was fantastically convenient for taking care of self-medication (although I never accessed it) but dreadfully inconvenient because the area was painful and I couldn't wear jeans or participate in ball sports.

Now I have a port in my upper breast, in a place that falls right underneath the bra strap, which means I have to wear strapless bras when I have the needle and system on. And I cannot drive during that time either, because the car belt falls over the area. Inconvenient!

I have never accessed the port myself (here in Spain we go to the hospital every 7 days to change the needle and system, during an IV treatment) but it is very important for me to have clear visibility to clean it, change the adhesive, and handle the medication -- and upper chest is NOT a good place for that!

Another issue that is very important for me is that the shape of the port is rounded in a way that would prevent it from tearing the skin. After a few months in my leg, the skin tore open and I could see the port. That was rather traumatizing at age 14 (or any age), believe me! Then the port was moved a couple inches and this never happened again. But now on my chest, even though its a smaller brad port, I can feel its edges through the skin and I have to focus on thinking of something else or I would go mad with the impression and fear that the skin will tear again. So please design something with very curve edges!! No edges, please!!!

By the way, although upper chest is not a practical place, I would not choose upper arm because I really value independence (accessing it is not so crucial to me, but being able to change the adhesive without help, is!).

Keep us posted, and thanks so much for taking the time to ask us!
 

MMBinNC

New member
I access my port myself. It is insanely easy, and more than that I like not having to deal with nurses coming to my dorm room (they always get lost). Now that I'm on Tobra, the latter reason isn't much of one anymore. But seriously, it's mad easy and having a port is far better than a PICC line. Last time I had a PICC, they tried 5 times in my left arm before we gave up and switched. THen it too two times...mind you this was without anestesia (and after the first try w/o Emla) and with an 18 gauge needle. That drive home was abysmal. If you gain some weight (Megace ftw) a port isn't that noticeable.
 

MMBinNC

New member
I access my port myself. It is insanely easy, and more than that I like not having to deal with nurses coming to my dorm room (they always get lost). Now that I'm on Tobra, the latter reason isn't much of one anymore. But seriously, it's mad easy and having a port is far better than a PICC line. Last time I had a PICC, they tried 5 times in my left arm before we gave up and switched. THen it too two times...mind you this was without anestesia (and after the first try w/o Emla) and with an 18 gauge needle. That drive home was abysmal. If you gain some weight (Megace ftw) a port isn't that noticeable.
 

MMBinNC

New member
I would still love a less noticible one though. Whenever I go to the beach people ask me about my G-Tube and port. But when I gained weight a few months ago with Megace I was fine. But the main audience for the port would be people who generally have weight issues (cancer/CF/chronic illnesses) so I think that it would be great to have a less obvious port. As a person on Wall street and a patient, I think that this would have a great potential for money making simply because I am always worried about aesthetics with my implanted medical devices.

One other thing. As people get sicker, or have more physically debilitating diseases it may be easier/more convenient to have someone else like a nure/parent/spouse access the port, so I think that that shouldn't be a significant barrier to your project.
 

MMBinNC

New member
I would still love a less noticible one though. Whenever I go to the beach people ask me about my G-Tube and port. But when I gained weight a few months ago with Megace I was fine. But the main audience for the port would be people who generally have weight issues (cancer/CF/chronic illnesses) so I think that it would be great to have a less obvious port. As a person on Wall street and a patient, I think that this would have a great potential for money making simply because I am always worried about aesthetics with my implanted medical devices.

One other thing. As people get sicker, or have more physically debilitating diseases it may be easier/more convenient to have someone else like a nure/parent/spouse access the port, so I think that that shouldn't be a significant barrier to your project.
 

athletixbc

New member
I don't know why people freak out about the size of the ports. To be honest it's hardly noticeable and I have mine on my chest about 4-5 inches above my right nipple. I've had my port about a year and haven't yet accessed it on my own but I'm sure I could. Would be nice to have the option. I always used to access my own PICC lines and had no problems.
 

athletixbc

New member
I don't know why people freak out about the size of the ports. To be honest it's hardly noticeable and I have mine on my chest about 4-5 inches above my right nipple. I've had my port about a year and haven't yet accessed it on my own but I'm sure I could. Would be nice to have the option. I always used to access my own PICC lines and had no problems.
 

keeleyhearn

New member
I´ve just had my port placed just under my right collarbone. I couldn´t care less about the scar or how visible it is, Anything is better than the torture I had to go through when having my IV´s in before. My veins would collapse on a daily basis and was excritiatingly painful and left me very co-dependent on people to do even simple things incase a sudden movement caused the I´V to come out. I´m very happy with the port, I don´t access it myself, In Spain I just go to the hospital every 6 weeks and have it flushed and if I need I.V´s the nurses come to my house.
Thanks PORTDOC for taken such an interest in us and wanting our feedback, it´s nice to be able to give back personal opinions and experiences, in the hope that one day people like you make our life easier.
 

keeleyhearn

New member
I´ve just had my port placed just under my right collarbone. I couldn´t care less about the scar or how visible it is, Anything is better than the torture I had to go through when having my IV´s in before. My veins would collapse on a daily basis and was excritiatingly painful and left me very co-dependent on people to do even simple things incase a sudden movement caused the I´V to come out. I´m very happy with the port, I don´t access it myself, In Spain I just go to the hospital every 6 weeks and have it flushed and if I need I.V´s the nurses come to my house.
Thanks PORTDOC for taken such an interest in us and wanting our feedback, it´s nice to be able to give back personal opinions and experiences, in the hope that one day people like you make our life easier.
 

UNCLoveCF

New member
I had my first port placed one year ago on January 10, 2011. My port is placed in my upper right chest. I have a Bard Power Port. Mine sticks out far more than other CF patient's ports that I have seen. The upside to this is that I have never once missed while accessing my port. I wrote a blog entry about my experience with my port including advice on taking care of one's port. I access my own port and prefer to access my port over most nurses. I would not have a port placed that I could not access on my own. The reason being is that when I am doing home IV medications I would need a home health nurse to come out to access a port that was inaccessible by me; not only is that unnecessary, but also very expensive (ie: health insurance dollars out the window). When I first had my port placed I was not pleased with the width of my scar; however, I had a nurse who yanked my steri-strips off one day after having my port placed despite me telling her (under the VIR doctor's orders) NOT to pull of my steri-strips for at least five days. Needless to say the site opened slightly and scarred very wide. Personally I would not have a port placed that I could not access myself. I have tried to train my family to access my port for me, but find that they do not feel comfortable accessing my port. They do know proper protocol to ensure healthcare providers are following sterile technique during port access while hospitalized. But I know there are CF patients who refuse to access their own port and rely solely on nurses.
 

PortDoc

New member
Thanks again to everyone for your input, it's very valuable. One of the main goals of developing the Invisiport was to provide more patients with the opition of having a port by making it less invasive, essentially a non-surgical port. @Rmotion, thanks for the suggestions, but the port is already developed (you can see it at stealththerapeutics.com), I will keep your thoughts in mind when start designing the next version. I like your comments on the importance of ease of access.

Also, I am always happy to answer any questions about ports/interventional radiology. Thanks again for your time.
 
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