Question On Having An Implanted Port?

[kay1964]

My neurologist today suggested I consider a port.Problem being my dyhradtion.Like I discuss with him the hydration I get from iv fluids non comparison to me trying all day to drink enough to feel hydrated. Right now I have an infusion center my doctor sends me to when I need it.which I would go every week but unfortunately my veins are getting bad and it gets painful.so any one with any input I would most appreciate. Sorry in brain fog it's the end of the day,just had infusion of fluid today, only because I had procedure done today that my doctor felt I would do better with if I were hydrated.

[DeGenesis]

There is also a PICC line.

It looks an implanted port may be a better option if you think you will need infusions for a semi-indefinite period of time.

I have never actually heard of someone having a port implanted for IV saline infusions related to POTS, but a quick glance suggests that it might be associated with less complications than a PICC line.

http://www.ncbi.nlm.nih.gov/pubmed/24005884

This study suggests that implanted ports are associated with fewer thrombotic events, as compared to PICC lines, at least in chemotherapy patients.

Best of luck.

[Becia]

I'm about to get a picc line for a trial run of hydration therapy, with a port happening if successful. I def do better with Iv hydration than drinking, but have only one vein left, and with the numerous neuropathy issues I have, it's very painful and sets my heart rate really high if I'm touched or poked too much. I'm wishing they would do the port instead of a picc because of the infection rate issue, but if it doesn't work like he wants it too, I'd rather have it easy to remove than have surgery to place it first (and my doctors are considering this a type of surgery).

[kay1964]

Thanks,the reason for me port was considered i too can not seem to get hydrated enough i have very low levels of renin and aldostrone.i receive fluids just for hydration about once a week.have to be careful with salt tabs in gi tract.could not take florinef.summer hot here in sc.trying to keep cool and hydrated.feel so much better with being hydrated with i have infusions i can never hydrate myself on my own.is there a reason a picc line for you is being considered instead of port?

[kay1964]

Sorry reading post on my phone while i am out.seen your whole post so picc is not surgically done.please let us know how you do.

[Becia]

For the past six months I've struggled with swallowing issues, vomiting issues, and just basically getting what I need out if the nutrition I try to take in. High salt diet has made me even sicker, it's like my stomach just doesn't want any of it.

Looks like next week may be the day, either Wednesday if they really expedite it, or Friday. If they can't get it done then, it will be early the next week. Will let you know here how I do... Not looking forward to the pain of it, but am looking to feeling more of have i feel when I get hydrated correctly for my body.

[kay1964]

Will be waiting to hear how you do:)

[Poohbear]

I had a port for iv fluids after multiple hospitalizations, picc line problems etc. I had my port for 6 years before it failed and had to be removed. I chose not to replace it for a host of reasons but primarily because I have no where else for placement other than jugular and didn't want to go that route.

I had some issues with the port (mostly because the surgeon who placed it did a very poor job) and I had some pain and discomfort from time to time but overall the benefits outweighed the negatives.

Generally, if you know your need for fluids is ongoing and more long term, the port is a safer way to go as there is less risk of infection than with picc lines.

Best of luck to you!

[E Soskis]

I had a port placed for weekly IVIG infusions - it lasted over 6 years and I used it for IV fluids and other IV medications - it was wonderful and if I could, I'd have another one placed. I had to have a subclavian double lumen central line placed for plasmapheresis and it lasted 3 years then became infected which caused the port to get infected as well. I cried and cried when the MD told me I had to have the port removed as well as the central line. I now have a "necklace" graft that is used for the plasma exchanges but, it was major surgery and I have serious side-effects and consequences from it. The MD declined to place another port at the time he inserted the necklace graft due to potential cross-contamination and infection of both if one became infected. I now have no IV access as my left arm is messed up from failed graft and fistula attempts. My right arm is red, hot, and swollen all the time from the necklace graft. I have resorted to placing an IV in my foot in desperation when I became extremely dehydrated. The hospital staff are scared of the necklace graft and refuse to stick it for IV access - it is "against policy". If I really ever need and IV again, I will have to have a femoral line placed and so far, I have had 3 rounds of septicemia from femoral lines - so, if you can get a port placed, go for it! They are wonderful and relatively hassle-free.

[Becia]

Yeah, I was begging for port over picc line, and may still go in and argue the same thing on Tuesday when I have to have a physical for the line (they want to know I'm "healthy" enough to handle this), just because the infection rate thing scares the fire outta me. I think I can handle it, but I'm still a bit fearful. I saw a surgeon that my gp wanted to put a port in me, and he said he couldn't do anything until we had a timeline set up, he wasn't comfortable just putting one in without knowing how long it may go. Right now, anything is better than nothing though.

Just trying to focus on the therapy, and getting my body back in halfway decent shape... Or at least be able to stand and walk a bit without kissing the floor after 25 feet or 1-1/2 minutes (yep, still passing out within that much time). If this will start to help lower my heart rate as well, this could save me from another painful procedure for a pacemaker to control the tachy.

[Becia]

And talking about weird Iv placements, I remember when I worked as a phlebotomist in the hospital in my home town, and how there were some people that we all would draw straws about who was gonna go draw them. There was the diabetic who basically had dust for veins when she would be admitted, and was always needing 5 tubes of blood taken, and then there was this end stage renal patient that had just nothing. I would rather have stuck the one gentleman who had a vein on to of his finger than this poor lady... One time, the only place she could get an Iv was a surface vein on her chest, and she got mad and yanked it one, blowing it. I always wondered why they didn't place a central line in her, but she wouldn't let them. She would rather be stuck 10+ times, which now makes me cringe, because I can't handle being stuck twice for ivs and blood draws. Sends my entire autonomic system into overdrive.

[E Soskis]

Yeah - I worked in an ER for over 30 years and could stick any vessel anywhere anytime - I once had an addict tell me that if I took "my show" to the street, I would get 30-dollars a stick! What a hoot! Just be aware that as nice as a port is, it needs maintenance - it should be accessed at least once a month, flushed, then have heparin instilled. Most home health care companies that also perform IV sticks and meds will set up something to accommodate this. I may not have used the port for weeks to months at a time but, when I did use it, I used it a lot - it was well-worth it.

Let me say something about PICC lines: their use is exponentially increasing so consequently, so is the complication rate from them. PICC lines put you at risk for venous thrombosis, thrombophlebitis, and central line infections. I had a PICC for over a month in which I gave myself IV antibiotics twice a day - coincidentally for sepsis contracted through another central line. The PICC line did not get infected but, it left my arm with swollen veins and pain that is still present 7 months later. I have also been in a battle with cellulitis in the PICC arm just from now what appears to be a chronic phlebitis. Given the choice, I would never have another PICC placed - just too much trouble and too many problems.

[Becia]

How long did everyone port last? I know you gotta flush it at least once a month from your post, but did they keep them in you for years? My docs want a time line for me needing this type of care, and I know I can't give one, and im willing to give the picc a trial run, but I have a feeling I'm gonna need this therapy for longer than the 6-8 weeks at the initial start, and I'm terrified of the complications, but oh so ready to be less symptomatic, and able to focus on my swallowing and stomach issues.

[yogini]

have you tried florinef or other meds that help you retain fluids?

[Becia]

Yep, on 0.2 of florinef, with a lot of adverse reactions:(

[E Soskis]

My port lasted 6 years and would have lasted much longer had I not developed an infection in a different central line that traveled to the port since they were in close proximity. I know people that have had them for over 10 years. It is individual - you can't predict. With good care and maintenance, they should last indefinitely. Your physician does not fully understand ports to be asking for a "time-line". It doesn't matter. If you have poor venous access and anticipate receiving regular IV fluids, you need a port. There is absolutely no need to fry all your peripheral veins attempting to stick in an IV. You need your peripheral veins for circulation and for simple blood draws. Look into the new generation ports: they are smaller and offer all types of IV access. You need to be speaking to a vascular surgeon - they are the ones that put in ports - or a good general surgeon. I work in trauma and our trauma surgeon placed my port - he did an excellent job!

[Poohbear]

My port lasted 6 years also with weekly usage (I had to access with each use because I'm allergic to all the adhesives and dressings) 2-3 times a week.

Some ports do last a long time BUT most manufacturer's recommend replacement after 5 years so you may want to consult with the mfg. of whatever port your Dr is placing to ask what their recommendation is. At some point, if you use it often it will need to be replaced because the "bubble" you poke will wear down--it can only be stuck so many times before it starts breaking down. Having said that, like E Soskis said, if you take care of it and are able to avoid infections it should last for years.

As for flushing it, yes it's necessary but I did all my own maintenance....I gave myself the fluids I needed and flushed the port as I needed to and hardly ever needed a nurse to help me access it---I did most everything on my own after I was taught.

[Becia]

Yeah, the vascular surgeon didn't want anything to do with me, he kept telling me he only did chemo ports with a def in and out time, and said interventional radiology would be the area I need to see about having the line.

I see my gp today for a physical, and I guess we are discussing this all further, because by the time I leave, I should have a date for when whatever is getting put in. I'm taking posts from this line with me for information, and I'm still battling for a port, because it won't restrict my arm as much (I interpret for the deaf, and have been told if I have a picc in, it could possibly affect my signing while it's there), and with my history in the last year of needing fluids so often (every couple weeks is the longest I've managed to go), I can see a port being very helpful over a picc, which is a temporary fix to me.

[looneymom]

So much helpful information. I suspect that I may be dealing with this soon on my son's behalf. The port sounds like the better way to go. I hope my son will be given the option for a port if needed. However, does this area need to be covered up when bathing. I think the Picca line does but was not sure about the port area?

[Becia]

I believe picc lines have to be covered,and ports do if they are currently accessed, but I could be wrong.

They are placing a picc tomorrow morning in me. My hr in the past three days hasn't gone below 100, it's currently 136, and they are hoping that the fluids will start bringing it down. I told my insurance it's either this at home, or I'm in the er every week if not multiple times, you take a pick of what to pay... $600 a liter for fluids in er, or $20.

[Becia]

Yesterday they placed a midline catheter in my arm, which is kinda like the picc, but it doesn't go all the way to the top of the heart. I chose to go this way, because since my doctor isn't sure how long or how effective this will be, this is a 30 day line, which should give him plenty of time to realize how helpful the fluids this way is for me. At the end of the 30 day period, the tech who placed my line said he could put a picc using the same line, just by adjusting the catheter in me, and exchanging out the end which I hook myself to the IV, thus eliminating another torturous procedure, and then that could tide me over until I get a port placed, because my insurance it could take a few weeks to get approved. He also said with this catheter there's a slightly less chance of risk of infection like endocarditis,because the catheter for this one only goes to the top of my shoulder, not around to the top of my heart.

The tech totally gets that I will be back in, and already has me on the schedule, lol.

A couple things from yesterday's ordeal... I already knew I don't handle pain well, and I didn't handle it well at all yesterday. They numbed me, and said they would wait for me to give them a sign to proceed. Well, the numbing shot of lidocaine burns of course, and that set off a heart rate of about 150, and me in a slight panic. When I thought I was numbed, I wasn't, because he started doing everything, I started crying, it was so painful. So he stopped, re numbed the area, made sure my hand stopped twitching (I think he may have hit a nerve, because my hand felt funny and every time he touched me, I twitched), and then we went back along. After the second shot, it wasn't too bad at all, still had some pressure/uncomfortable moments, but nothing like the sharp stabbing pain beforehand.

And I guess this is a good thing I decided to go the route of getting Iv hydration, because he was talking to me about my blood work before the procedure, and my kidney function isn't the greatest in the world at the moment, no doubt from being constantly dehydrated not only from just being potsy, but also from dealing with my stomach issues the past 6 months. He believes I will rebound once I start getting properly hydrated, which is a good thing, but if not, it's something to take to my doctor.

I haven't had any fluids yet, home health had to wait for me to get the line, and then they had to submit to my insurance, but hopefully in the next couple days they will be here and it will start. In the meantime though, if I have to go to the er for fluids and meds, they can do everything through this line, labs and all. That alone is a miracle I'm very grateful for, because the hr spikes under pain and touch, and with the fact I haven't gotten it below 100 in the past five days, I can't take much more.

Will keep y'all updated on how things go

[looneymom]

Hang in there Becia. Tyler had to have this procedure done when he was in the hospotal for 10 days because the iv line kept messing up. This procedure is not fun to go through. I remember it well with my son. The best thing is that you will get the fluids that you need in the comfort of your own home. Having the 30 day trial run will let the doctor know how much you need these fluids. Do keep us posted and hopefully you will not have any troubles with the line. Tyler had his in for 8 days and had no problems. Be strong and sending gentle hugs.

[Becia]

Home health came out today, and in am currently set up for one liter a week, but the nurse is gonna call to see if they can get that bumped to twice a week. There is some sort of shortage of what the doctor prescribed, but right now it's just a usual saline drip, run how I chose to have it run (which is slow and steady). I also have nine weeks approved by my insurance at the moment too. Have already been told I will have to go back in and have this switched out to a different line.

Right now I fee like a truck has run me over, I am so exhausted. I couldn't lay on my right side, so last night was sleepless. My only trouble is I keep hitting it on accident and it's very much sore, lol... I joked earlier that I need to somehow magically reduce my boobs because it's in the inside of my arm, and I keep knocking my boob against it... I thought the nurse was gonna fall over laughing.