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Hi Everyone,

On Friday I had my appointment with one of my cardiologist's in Hershey and we were discussing all of my problems...she actually listens to you! Anyway, I brought up the fact that when I need blood drawn or an IV they have major trouble. They can be in the vein and have no blood return or my veins will keep rolling around so they just can not get into them. Plus they are deep I am told. For IV's, it takes multiple tries 95% of the time....it's ridiculous and gets uncomfortable pain wise after a bit.

So Dr. Ting suggested a port under the skin. She said that she would highly suggest it but that is her opinion and she knows that it is a very touchy subject with other dr's so it's up to my mom and I to proceed with the idea and perhaps bring it up to my family dr and see what he says and go from there.

I am nervous about the idea of having a port. More nervous about having it put in. I think they put you to sleep if I remember correctly. But I think I also remember hearing the patient was in some pain after it was placed in.

I have a few questions:

1. How does it work exactly with it being under the skin?

2. Does it hurt to access it and draw blood or receive IV fluids or meds?

3. What is the risk of infection?

4. Is the risk of infection HIGHER than the risk of getting an infection with a regular IV?

I think that is all for now...thanks for any advice that you can give me!

Thank you!

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Gwendolyn,

I've was suppose to get one also for almost 9 months. Finally met with the surgeon this July and in September I was suppose to have it done as in inpatient due a complicated situation. I never wanted one, but being hydrated with iv's 2 or more times a week plus blood work, the iv specialist advised me as the spend a very long time finding acces and my doctor agreed to have it done when he would be in the hospital incase something went wrong with me. I'm very complicated and other docs just don't get it when it come to me and my pots.

It rarely hurts me to have iv's as I have no feeling in my hands and arms. They have to use pedi needles on me and only once they have hit a nerve and did tempory damage. The reason I'm against the port is my friend died from her's. They did bring her back to life but they didn't realize that the port was still growing infection for 2 years that wasn't caught till 2 years after that event. She was deathly sick over and over again.

So since I did not get the call back for my port surgery date, I have watched other pots patients become infected. I wonder if this is a sign from above for me, as I don't need one more problem right now. Also in the infusion clinic other who have them tell me the same story of being infected.

I would ask you first, how often are you needing blood work and iv's done?

How much are you drinking at home? Stay away from caffine and teas as they will dehydrate you.

I have to drink gallons of gatorade type drinks a day or water with sea salt.

If you can suck on small ice cubes ( make sure they are small or they will be hard on your teeth ) and make slushies with gatorade as ice will keep you hydrated longer. You can make gatorade ice cubes also to suck on. I bought a ice machine for the counter, but decided the noise will freak out the dog too much.

If you know you are going for blood work start drinking before and use a heat pack to warm up your veins.

Learn to travel with a large mug with ice and your beverage in it, then suck on the ice ( ice becomes like a iv slowly gowing into your body )

Sweetheart, I'd try these things first if you are able. I'm waiting for the day that they can't get me at all. It does take then about 1/2 hour or more to find something and even then my vein can blow. This week they started to use the back of my arms.

I don't want to have the port in, as I know with all the ills I have with Pots how hard it will be to keep it sterile.

This is just my 2 cents worth for now.

I'm fighting it as long as I'm able to... One day I may have no choice soon I'll have a home nurse and things may be different then.

I wish you the very best in your decision. I know this isn't what you asked, but I'm faced with the same thing and this is everything I've been told to do till the day they can't get in.

xxx's

Bellamia~

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Thank you Bellamia. I know someone too that just died recently from sepsis possibly from her port (that's what I think happened) so I am aware of all the risks.

I am admitted into the hospital just about every month or two and am in the ER a lot. Blood work is quite frequent as well. I was in the hospital back in September and it took 3 IV tech's to get an IV in me. They too ended up using a pediatric needle. Getting an IV in me on the first or second try is extremely, extremely rare. It typically takes over 3 tries and as much as 13 tries...not joking.

I drink a lot. I love ice actually. I suck on it all the time but don't feel better per say. I drink before getting blood work and it sometimes helps and sometimes doesn't. When I'm in the hospital, they normally always put hot soaks on my arms to warm my arms up. Again, it doesn't always help but sometimes it does.

I am used to being stuck and I don't mind it much anymore but I get tired of all the tries it takes to get blood drawn or an IV put in.

;)

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2. Does it hurt to access it and draw blood or receive IV fluids or meds? Yes--you are still sticking a needle through skin and it is a larger diameter needle that has to be used for port access than the tiny needles you can use peripherally.

3. What is the risk of infection? With a port most Dr's will tell you it's not a matter of IF you will get an infection but WHEN. And then it becomes a matter of if the infection will be treatable before it kills you. Approx. 1/3 of patients that get Sepsis die. Over 1 million people die a year from Sepsis (not that all of them had central access though) and Sepsis is the 10th leading cause of death in the U.S.

4. Is the risk of infection HIGHER than the risk of getting an infection with a regular IV? Yes! Peripheral I.V. carriers only about .05%-.09% risk.

Getting a port in is not always easy. If you have poor venous access then even getting a port in place can be a major battle. It took more than one try for my vascular surgeon to get an accessible vein even for the port (I had no vein options left for a PICC line either).

I can relate to what you are saying about ending up in the hospital once a month and frequent ER visits but leave the central line options as a total last resort.

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Thanks Poohbear. I will stick with IV's and blood work for now until it is no longer possible, I guess. I can't even begin to imagine what it would do to my mom if I got an infection and didn't make it. We've become so close through out the past 5 years of my being ill....I just know she couldn't handle it.

Thank you both for your upfront answers.

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One last thing I'd like to add is there a chance they can puncture your lung the vascular surgeon told me. He said if we do we'll fix it... WELL THAT'S THE LAST THING I'D NEED plus he said I'd bleed a LOT and I'm a bleeder. THE WHOLE PROCEDURE would flare me up. SOMETIMES, I KNOW hospitals aren't staffed enough so the iv spec are always in a HURRY to get to the next job.

THEY NEED TO HIRE MORE STAFF ALL AROUND, HIRE MORE SPECIALIST! Could you find a hard vein with staff breathing down your neck that there's someone else in maternity that needs an iv stat? Most er's won't ever call IV SPEC. and willy stick you over and over again then theygo to the ac which the scould leave free.

SORRY, JUST MY LITTLE VENT AS MORE PEOPLE WOULD LIVE if more staff were hired to take the time to do the job and not be RUSHED.

BELLAMIA~

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I was told by more than one nurse that you, as the patient, can always refuse blood draw or i.v. until the IV spec. team comes. It does delay your treatment and could prolong the time you are at the ER but it is an option to potentially avoid some unnecessary sticks.

If you have to frequent the ER and your main reason is for IV fluids then I would suggest one of two things:

1-Get hooked up with an outpatient IV infusion clinic to go to for fluids when you are needing them

2-Talk with your Dr and hospital administrators about the problems you have with the ER and ask that your chart be documented for the need upfront to call iv specialty team.

Another little trick is to keep one of those therma-care packs in your purse in case you end up in the E.R. Many hospitals will tell you they don't have heating pads so the therma care packs are sometimes helpful to place over your arm to heat the veins and get the blood to rush to that spot so they can access the vein. You can also fill a sink with hot water and stick your hand in the water as hot as you can stand it for a few minutes and that will sometimes pop the veins in the lower arm/wrist up enough to access.

Yeah, I would not call a punctured lung an easy fix. That happened to me and despite the fact I woke up from surgery saying, "I can't breathe" nobody really listened to me for three days at which point I had a major lung collapse and was rushed for emergency surgery, spent extra days in ICU and more than a week extra in the hospital and my lungs have never been the same ever since. Not to mention, the chest tube was the worst pain I've ever had in my life---much worse than when I had a spinal leak headache from lumbar puncture. I was on the strongest narcotic available and it didn't touch my pain.

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Yeah, I would not call a punctured lung an easy fix. That happened to me and despite the fact I woke up from surgery saying, "I can't breathe" nobody really listened to me for three days at which point I had a major lung collapse and was rushed for emergency surgery, spent extra days in ICU and more than a week extra in the hospital and my lungs have never been the same ever since. Not to mention, the chest tube was the worst pain I've ever had in my life---much worse than when I had a spinal leak headache from lumbar puncture. I was on the strongest narcotic available and it didn't touch my pain.

Poohbear,

I'm so sorry for all that you went through. Thanks for sharing as you really made my decision even stronger than ever to stick to my above statement. That's another issue I have is people not listening to you, not understanding, and you end up suffering. That is why it is sooooooo important to educate everyone here with the honest facts and not try to just scare someone from a procedure or statement.

(((((((HUGS ALL AROUND Poobear!)))))))

What we don't know can hurt us!

Blessings and love~

Bellamia~

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AVOID PORT! I had one port in during chemotherapy because my veins were terrible--not only from the chemo but also before the chemo. Always difficut to put in IV during many hospitalizations - even using heat, iv insertion team and pediatric ivs.

The risk of infection is too severe with a port! Being a bad stick is generally not a reason!

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I have them do this little trick also. I have them use the blood pressure cuff with my arm hanging down as a tourniquet. This seems to pump the veins up a bit higher some times we do both that and the tourniguet. don't laugh, sometimes I ask my veins to cooperate with me, as they said I have sinking veins or rolling veins. They once told me if I was in a car accident my veins would sink beneath the surface like a reflex and protect myself. My doctor got a chuckle out of that one.

But when I used to drive I would visualize a parking spot and get one right up close to the store. Before I went 2 times a week I would not tell blood drawers I had a problem. I would just picture them finding a vein. Now everyone knows me. So it'ts did you bring your veins today? They already have me set up for failure, but I'm going to out smart them week by week. So now I talk them up and they come slowly but surely! I also use one arm for a while and then switch to the other.

I told them last week they could make a map of my veins if the could nolonger find them. That's what my friend has to carry around now since she can't have another port and only has a few life saving veins left as she is all scarred up from years of iv use. I've only just begun as it's been over 1 year in the hospital infusion clinic now 2 days a week for me. In beetween that it's the ER.

If I think of anything else that could help I'll post it I'm still brain fuzzy from my bad fall on my head.

Be well all~ It's a beatiful fall day here~

bellamia~

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Ugh. I am so conflicted. I don't want to get an infection at the same time I don't know how to continue going about my life without a port.

I've been hospitalized twice this month for severe dehydration (within an hour I can become dehydrated due to crazy intense vomiting), and the only thing they can do to stabilize me is D10 fluids. I've spent so much time in the hospital, and I just don't want to live in the hospital anymore.

At the same time, I'm not keen about surgery, and the risk of sepsis scares me.

I keep making up my mind that I'm going to get a port and then I hear about another one of my POTS friends whose port got infected and I no longer know what to make of it.

I want to get home care...and then be able to do the infusions that way, but not at the risk of my life. When is it the last resort? Cause right now I feel like we're at the last resort...but technically we're not...I could just spend half my life in the hospital....

Home care was wiling to do peripherals for awhile, but now refuse, they said I have to get a PICC or port.

These infusions aren't for maintenance, but rather for dehydration and crisis...severe dysautonomia spells with heart rates up to the 240s...

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oh you dear sweet thing,

maybe if you can just let go and let the answer come to you as I did, by I went and no further action was taken. yeasterday at my infusion when things started to become difficult i said, "now going to visualize them rising and talk to my veins now come out!" there will be a day that i just have to let go. i spend 2 days in the hospital and it feels like my whole life.

i pray for the right answer to come to you. i wish none of us had to go through any of us this. keep drinking as i go say a prayer for you. keep us updated and wish you the best of luck.

((((((hug))))))

bellamia~

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megan2, I don't know what YOUR answer is....if you are having to be admitted on a regular basis you may need to seriously consider the port option. Research, educate yourself on the pro's and con's and then make the best choice you can---that's all anyone can do. I was landing in the hospital two or three times a month for well over a year (literally) and had no vein access left anywhere in my body. There were spending over two hours trying to get a line in me. It was difficult for them to even get a PICC line in me and when the PICC wore out they had a really tough time finding a vein for the port.

I was in a similar position (and still am even WITH a port). Long term the goal is to find other therapies that will work in the long run because the port is not designed to be a "forever" option either.

Have you tried medications for the intense vomiting?

It sounds like they don't have problems accessing you but that you have a frequent need for I.V.'s. Have you gotten your Dr to write an order for you to go to an infusion clinic? This would save you the hospital visit but still get you what you need AND it would give you more time to work with your Dr's to find an effective treatment for the vomiting so that hopefully you could avoid the port.

In reference to some of the issues discussed earlier in this post.....there is another issue I continually run into that folks who are considering port need to be aware of. Everybody says, "Oh, if you are difficult to access get a port and then you won't have that problem" . Well....first of all that's not always easy either because I can tell you that when I am dehydrated they can't get blood return even from my port. The other problem is that most Dr's offices, labs and EMT's are not allowed to access a port and/or they don't even have the supplies needed to access it. It requires special needles and supplies and few dr's offices stock these supplies. So, 95% of the time when you go to a dr office, lab or have to call an ambulance they are still going to have to find a peripheral access. So being a "difficult stick", in and of itself, is not enough reason to get a port and probably won't accomplish what you expect it to.

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I just saw this device online and wondered if anyone has used it as you need a script and it cost around 4,500 dollars (don't quote me as I saw someone posted that price somewhere else. you have to all for the cost. it can be bought or rented.

I'd like to get one if insurance paid and save the cost of a port.

http://www.accuvein.com/?_kk=accuvein&...CFUlo5QodSXiVLQ

( Vein Finder, Venipuncture, Vein Illumination | AccuVein AV300 ) I'm going to ask the iv team if they have heard of this. Maybe the hospital would buy one, I'll have to google around and see what info I can find about this little machine and maybe send for info.

I HOPE THERE IS SOMETHING LIKE THIS THAT MIGHT HELP ALL OF US.

On a lighter note:

Hope you all had a good nite wherever you all are. I had a HAPPY HALLOWEEN WITH A LITTLE BRIDE age 5 AND A BABY MONSTER age 2 1/2 WHO MELTED MY HEART. I PASSED ON A STUFFED WITCH that reverses to the princess. I told her it had been her mom's and now her's and one day it could be for her daughter or child. She told me will it's a baby toy and I don't like it, but maybe my daughter will so I'll keep it. The monster, who hadn't been talking much, told me to open the door please!

THEY WOULDN'T STAND STLL FOR PICTURES and I was dressed as a cow and no one noticed. lol! Once again I'm not in any pics but the neighbor with her baby. I had so much fun and for a few mins I felt normal again...

blessings and love,

bellamia~

xxx's

bellamia~

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Generally speaking, PICC lines are intended for more short term need. Like if you need I.V. antibiotics for 10-14 days. You can, in theory, keep a PICC line in for months but in reality it usually won't work that way for a long list of reasons.

PICC lines also carry a much higher risk of infection because you have an exposed outside entry to the vein.

Ports are more invasive to place but are "enclosed" under the skin.

With a PICC line you can't get it wet...you either can't shower or you have to take much effort to wrap and tape everything so that no water gets to it. With a port, as long as it is not accessed you can take a shower, swim etc.

I have been to a few facilities (mostly large top-notch, teaching hospitals) that have the accuvein (or something similar to it). I have not found it to be helpful in my case. You can see the veins all you want but they still blow, roll, etc. I've even had use of interventional radiology where they used fluoroscope guidance but if you don't have the veins there is nothing to see. And, again.....just because they see them doesn't mean they can successfully access them if your veins are truly in bad shape.

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Good to know Poohbear,

I was wishing I hit on something new and maybe good.

:)

bellamia~

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Hey!

I've had one for a year. I love it. My veins are impossible. Think long and hard about it. It's different for most people. It hurts less than getting 3 Iv sticks to get a vein, but the Port access isn't painless. It is still a big needle and it's in your arm or your chest. I have a power port in my chest. It's got about the same risk of infection. of you DO get an infection they tend to be a bit more serious. I haven't had one. I think it's easyer to take care of. In the hospital it's great. You have to get them flushed ever month so no matter weather you use it or not it has to be flushed. Also check with your labs. not all labs will use them. i still have to have blood draws done without my port at one of my main labs because they just don't do Ports. I hope that helps a little.

~nancy

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