Guest guest Posted February 7, 2000 Report Share Posted February 7, 2000 dear Barb, I to have an adopted child, a daughter who has had Many, many pnemonias. She is HIV+, but also has an underlying primary immune deficiency. She has had seven different broviacs and mediports. I have to say, the mediports are much easier in the way of care and infection rates. It does however, require a " stick " with a needle to access the port, but this pain is typically illiminated with the use of emla cream to the site first. If the do use the mediport, ask them to place it in the abdominal region or in the arm. Annettes was sub-clavical (right below her chin) and it was terrifying for her to see the needle coming straight at her and required a great deal of restraint with each access. At this time she has no access devices, but if she is to go back on the IVIG, I will request the mediport to make the process easier. I wish you the best of luck, and I have to say this has been a good winter for us so far. NO pnemonias, only 2 sinus infections and the ever so present loose cough. But no flu, thank god! Take care and Good Luck! Renée Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 In a message dated 02/07/2000 2:19:49 PM Eastern Standard Time, RCurk@... writes: > She has had seven different broviacs and mediports. I have to say, the > mediports are much easier in the way of care and infection rates. It does > however, require a " stick " with a needle to access the port, but this pain is > typically illiminated with the use of emla cream to the site first. If the > do use the mediport, ask them to place it in the abdominal region or in the > arm. Annettes was sub-clavical (right below her chin) and it was terrifying > for her to see the needle coming straight at her and required a great deal of > restraint with each access. Thank you . It is my understanding that they only do them subclavically here, but that isn't really a problem for Davin since he is legally blind and wouldn't be able to see it coming no matter where they put it. I am very happy to hear you are having a good winter; last winter was wonderful for us. THis winter has been a nightmare. I sure hope it is over soon! Thank you again for your input! Barb - adoring wife of dan, loving mother of seven special angels: Chelsea 0:), Gabby, Halee, Becca, Davin, Ana and Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 Hi all, I'm really short on time, but I thought I'd pop quickly into the issue of where to place a port. I had a port placed by a surgeon in my L subclavian, and I loved it. It didn't really hurt at all when it was put in (2 Tylenol #3's afterward, and then some regular Tylenol), and it worked perfectly for almost 3 years. Then it stopped functioning for an unknown reason, so it was replaced by an interventional radiologist. He put it in through my external jugular vein, so I have the entry site in my neck, and the well of the port in my chest, and they basically threaded it from the External Jugular into the Superior Vena Cava, and stitched both of the openings. I have rarely been in so much pain (it was fixable with narcotics, but they'd told me Tylenol would be fine). ANYWAY... I am getting off the subject. I hadn't asked beforehand how they were going to place it, so being in my 20's and self-conscious about the scar on my neck, and mad about the pain and the choice of placement site, I actually consulted a vascular surgeon, in case I ever needed another port, and to see if he would have done this one the same way. I certainly wasn't going to pull a functional port, but if I needed one in the future, I wanted a PLAN in place (live and learn, I guess...). Well, the reason I'm saying all of this is that he said he also would have gone in through one of the jugulars, because when you're looking at it in terms of venous drainage, the subclavian vein is the major vein that brings back blood from the arm. There are some smaller ones (brachial, etc), but they all feed into the same one (subclavian). So if you ever have a problem with a clot in the subclavian, you could be left with a lifetime of edema and other issues in that arm, which would probably not be fixable (and the lymph system wouldn't be able to compensate enough to keep the arm from being perpetually swollen and probably less than 100% functional). The jugulars, on the other hand, are on both sides of the neck, and there are two - the internal and external - so you have four major veins draining blood flow from the head. So if there's a problem with a clot, chances are that the complications (short and long-term) will be much less significant with the port threaded through a jugular vein. I know that after years of temporary central lines, ports, broviacs, etc., having a choice of where to put another is a luxury for some people... so I'm not advocating that someone not use a subclavian for a line if it's agreed upon between you and the doc that it's the best option. But it is something to ask your surgeon or interventional radiologist about, when you're looking at a port or other CVL. It's not something I ever would have thought to ask (and I consider myself a VERY proactive patient).... so I thought I'd pass it on. Welcome to the new people. I don't write in very often (I don't really fit the " mold " here - I'm mid-20's and have CVID, so I'm a bit old!), as between school (I'm a med student), life, and health, my life is often bordering on crazy! Take care, and hugs to all the kids! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 : Hope you do not mind? Have a question for you , what do you do when you pick up strep all the time from patients? This is my sixth infection since last november and I do not know what to do, any suggestions? Hope school is doing well, Alissa had her birthday party on Sunday and everyone had a ball, we had it at castles and coasters an amusement park,she is still recovering from the day but had a terrific time. God BLess, annette and alissa > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Digest Number 412 >Date: Tue, 08 Feb 2000 13:15:23 +0000 > >Hi all, > >I'm really short on time, but I thought I'd pop quickly into the issue >of where to place a port. I had a port placed by a surgeon in my L >subclavian, and I loved it. It didn't really hurt at all when it was >put in (2 Tylenol #3's afterward, and then some regular Tylenol), and it >worked perfectly for almost 3 years. Then it stopped functioning for an >unknown reason, so it was replaced by an interventional radiologist. He >put it in through my external jugular vein, so I have the entry site in >my neck, and the well of the port in my chest, and they basically >threaded it from the External Jugular into the Superior Vena Cava, and >stitched both of the openings. I have rarely been in so much pain (it >was fixable with narcotics, but they'd told me Tylenol would be fine). >ANYWAY... I am getting off the subject. I hadn't asked beforehand how >they were going to place it, so being in my 20's and self-conscious >about the scar on my neck, and mad about the pain and the choice of >placement site, I actually consulted a vascular surgeon, in case I ever >needed another port, and to see if he would have done this one the same >way. I certainly wasn't going to pull a functional port, but if I >needed one in the future, I wanted a PLAN in place (live and learn, I >guess...). > >Well, the reason I'm saying all of this is that he said he also would >have gone in through one of the jugulars, because when you're looking at >it in terms of venous drainage, the subclavian vein is the major vein >that brings back blood from the arm. There are some smaller ones >(brachial, etc), but they all feed into the same one (subclavian). So >if you ever have a problem with a clot in the subclavian, you could be >left with a lifetime of edema and other issues in that arm, which would >probably not be fixable (and the lymph system wouldn't be able to >compensate enough to keep the arm from being perpetually swollen and >probably less than 100% functional). The jugulars, on the other hand, >are on both sides of the neck, and there are two - the internal and >external - so you have four major veins draining blood flow from the >head. So if there's a problem with a clot, chances are that the >complications (short and long-term) will be much less significant with >the port threaded through a jugular vein. > >I know that after years of temporary central lines, ports, broviacs, >etc., having a choice of where to put another is a luxury for some >people... so I'm not advocating that someone not use a subclavian for a >line if it's agreed upon between you and the doc that it's the best >option. But it is something to ask your surgeon or interventional >radiologist about, when you're looking at a port or other CVL. It's not >something I ever would have thought to ask (and I consider myself a VERY >proactive patient).... so I thought I'd pass it on. > >Welcome to the new people. I don't write in very often (I don't really >fit the " mold " here - I'm mid-20's and have CVID, so I'm a bit old!), as >between school (I'm a med student), life, and health, my life is often >bordering on crazy! > >Take care, and hugs to all the kids! > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 Macey's port was subclavian, the thing she didn't like was being steadied (held) by her shoulders while the huber needle was inserted. Also she had her central line at her subclavian (but the opposite side from the port) and just called it her " boo-boo IV " . Macey's port was also placed in her left external jugular but was attached in her upper left chest. The slit (not really a scar) on her neck only shows up when she looses weight (such as right now) or when she has some type of skin reaction going on. There was some minor neck pain the day after the port was placed but that was relieved with medicine. At the time she was only 2 1/2 and not very verbal but she was complaining more about her neck than her chest hurting after the surgery. If done again the surgeon has said that he will not have to go in at the neck but will start at the old port site and attach it there. Ursula - & Macey (4 yr old w/CVID) mom Re: Digest Number 412 From: Babs63@... In a message dated 02/07/2000 2:19:49 PM Eastern Standard Time, RCurk@... writes: > She has had seven different broviacs and mediports. I have to say, the > mediports are much easier in the way of care and infection rates. It does > however, require a " stick " with a needle to access the port, but this pain is > typically illiminated with the use of emla cream to the site first. If the > do use the mediport, ask them to place it in the abdominal region or in the > arm. Annettes was sub-clavical (right below her chin) and it was terrifying > for her to see the needle coming straight at her and required a great deal of > restraint with each access. Thank you . It is my understanding that they only do them subclavically here, but that isn't really a problem for Davin since he is legally blind and wouldn't be able to see it coming no matter where they put it. I am very happy to hear you are having a good winter; last winter was wonderful for us. THis winter has been a nightmare. I sure hope it is over soon! Thank you again for your input! Barb - adoring wife of dan, loving mother of seven special angels: Chelsea 0:), Gabby, Halee, Becca, Davin, Ana and Emma --------------------------- Quote Link to comment Share on other sites More sharing options...
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