Anyone have (or have had) a Medi-Port?

[cameragirl]

I've gotten to the point of needing a central line for venous access. I started out with crummy veins that were very difficult to find, even when I was stick thin. I get IVIG three days every month, and it has gotten to the point of needing several sticks every single time they need to start a line. They can't leave a saline lock in, because the line is shot by the next morning. I went into the ER mildly dehydrated, and they were to the point of looking at my feet and shoulder. The infusion charge nurse discussed getting a port with me, and my doctor is on board. I've researched my options and I'm comfortable with the decision. Right now I'm waiting for a referral.

I'd love to hear your experiences if you've had a port before, or if you've worked with them. Thanks in advance.

[mbravebird]

How long would you have the port? There was a recent (2007) study that showed that 60% of people with long-term ports developed Deep Vein Thrombosis. Blood clots are very dangerous, and the side-effects of the blood thinners used to treat them are not pleasant either.

Not many regular docs know about the study, because it was done in the hematology community, where people more often have long-term ports. So if you are planning on having the port long-term, make sure you talk to a doc who knows the study before you go forward.

We chose not to give my son a long-term port for this reason, on the recommendation of his hematologist. We were enduring awful, awful sticks at the time, but she still said if there was any way to avoid a long-term port, to do it. This is partly because my son cannot be treated for DVT, because the meds would cause uncontrolled bleeding in him. But it's also because clots are a large risk for anyone, as are the meds used to treat them.

Hope this helps some...

[amcal]

I had a port for almost 5 months.  I had one month of daily treatment and I was so happy to have the port.  Constant IV sticks are painful and unnecessary.  I also got a prescription for emla cream that I put on an hour before the procedure and it numbed the area so, I didn't feel a thing.  

Medicine directly into your veins is really damaging.  I hated having to get the port but, it saved my veins and saved me a lot of pain.  

[amcal]

I had a port for almost 5 months.  I had one month of daily treatment and I was so happy to have the port.  Constant IV sticks are painful and unnecessary.  I also got a prescription for emla cream that I put on an hour before the procedure and it numbed the area so, I didn't feel a thing.  

Medicine directly into your veins is really damaging.  I hated having to get the port but, it saved my veins and saved me a lot of pain.  

[BaboAndBanana]

I have weekly infusions (sometimes bi-weekly) of a drug called Panhemetin, which is thick and nasty and can't go in an arm vein. I had a port put in almost 2 years ago. I will have it indefinitely, since my disease (Acute Intermittent Porphyria) is not curable and will most likely always require some level of maintenance (though I hope to one day get down to just monthly infusions!)

I am happy with the port. The surgery to have it put in was a little more painful than the docs led me to believe it would be. It took a good 2 weeks before I was pain-free, but they seemed to infer that it would be fine in a day or two.  And the scar gave me some trouble during my last pregnancy. It was itchy and painful. But now, the baby's a year old, and the scar is fine.

A friend of mine with the same disease has been ported for 7 or 8 years, and is on her 3rd port. Her first flipped and they couldn't get it to flip back- and from discussions with my infusion nurses, this is not as uncommon as you'd expect. Her 2nd port got clogged. Also a risk. Make sure your nurses are being very particular each time they access it. Learn the procedure, and insist on it being followed to a T. The nurse should wear a mask when accessing it, and ideally, you should too. The area should be cleaned with an alcohol swab and allowed to dry before being punctured, and it needs to be completely sealed up with tape while accessed. And then, have them flush it TWICE with heparin or saline at the end of your infusion, to prevent clogging. It's standard to flush it once, but you're allowed to ask for a double-flush. (If they give you grief, remind them that it's YOU who would have to go through surgery again if it became clogged!)

Another piece of advice- get a fuzzy soft seatbelt cover for your passenger side seat. It'll help. And for a while, until the scar is completely healed, bras may be tricky. I couldn't do sports bras for a while.

Good luck!

[cameragirl]

The pump will be in indefinitely. My condition is progressive, and unfortunately, most of the patients have the need for regular IVIG or plasmapheresis. I've seen the nurses perform flushes at the infusion center. They've always followed procedure for a sterile access, and the port patients have everything covered and taped up during the treatments.

How did you do during the installation? I have mine scheduled for the 4th. They could have done it sooner, but I have IVIG scheduled for the week after Christmas and it just wouldn't have worked scheduling-wise. I'm crossing my fingers that they will be able to give me twilight anesthesia instead of just a local, since I know I'd be a lot more comfortable. The anesthesia is considered safe, but my Ob's nurse said that the Imaging team doing the surgery would "love" me. They're more concerned about liability than anything if a mama is pregnant. (I'd wait, but the infusion nurses, my neurologist, and OB all agree that it needs to be done sooner than later.)

[gini1313]

I have had one, and I have worked with them.  They are great to have because there is no more searching for a vein.  The insertion was nothing for me.  I had it done with conscious sedation (Versed and Fentanyl, I don't know their pregnancy category off the top of my head) and barely remember it, but don't remember any pain at all.  I was sore for a couple of days, but nothing major.  It did hurt quite a bit when they accessed it, but it was over quickly.  You can get EMLA cream (and I don't remember why I didn't do that) that you apply before you get there to numb the area and they can give you a shot of lidocaine which will also numb the area, but I don't like the feeling of lidocaine (it stings) and it made me itchy afterwards, so I just had them do it.  It didn't hurt worse than an iv start, and it definitely was over faster.  Also, I don't know how many blood draws you have to get, but they can draw blood from them, so that is even less sticks.

I don't know about the increase in blood clots from ports, but it makes sense.  I would love to see a link to that study.  I would still get a port if I needed one again (let's hope I don't, huh?).  Good luck!!!!

[cameragirl]

Thanks, gini. I normally have a CMP done each day before my infusions. They usually pull it out of my IV, but getting blood return is getting more and more difficult. The PIV sites they're having to use are getting more and more painful, as well. Lately they've been having to go in on the inside of my wrist, which burns for the entire five or six hours.

I can't remember which drug the charge nurse said that they use most of the time...I'll have to ask. She did say that she had a friend go in with only a local and no sedative, but I believe that friend was a nurse herself. I'm sure I could do it, but if they are able and willing, I'd prefer to be sedated. I'd have to find the studies about the anesthetics, but the summary was that they found the drugs safe, but preferred to wait until delivery if possible. Most complications popped up in the first trimester, but at that point they couldn't be sure if it was trauma from surgery, the meds, or a spontaneous miscarriage. The surgeries were also complex and long.

[amcal]

I did not want to be sedated when I had mine put in and they were great.  I had it done with a local anesthetic and it was fine.  No pain at all and, it's a fairly quick procedure.   But, it was a little surprising to me how much force they used.  It didn't hurt but, I was jiggled around a bit.

 I had mine put in on a Friday and had my first treatment on Monday.  

I too was not prepared for the discomfort.   My chest felt very heavy and there was discomfort for about a week.  Also, mentally knowing I had a tube in my jugular going to my heart was quite difficult for me.  But, that all passed and i adjusted.  At the end of the day, I'm glad I had it.  

Thinking about you!  

[cameragirl]

Did any of you have them mark the placement prior to surgery with your bra on? I don't think it will be much of an issue since I like to wear light sports bras with thin straps, but I have read that some women have issues with it.

[mbravebird]

Originally Posted by gini1313 

I don't know about the increase in blood clots from ports, but it makes sense.  I would love to see a link to that study.

There are plenty of studies discussing it on pubmed, but I can't tell you exactly which one our hematologist was referring to. The reason I think it's worth asking about is because some of the risks can be mitigated -- for example, if I remember correctly there was NO incidence of DVT before a certain time period (1 year? 2 years? I don't remember), and then very high incidence after that point. Again, this is in the hemophilia community, so incidence may be different in the regular population, where clotting happens more easily. There are enough factors involved that it would be VERY worth talking to a doc who was familiar with the studies. Perhaps ports could be switched out to avoid clotting issues.

Also Arteriovenous Fistulas have a MUCH lower infection rate and have very successful long-term placements. I don't know about DVT with them. Again, something to ask a doctor about. I'm just pulling it out of long-term memory, having heard other parents of kids with hemophilia discuss it.

I don't mean to be a downer here. If it were me, though, I'd want to ask these questions. Hope this helps.
 

[amcal]

Cameragirl - yes, the surgeon was careful to make sure he avoided the bra area.  He went from my shoulder down to just before my breast starts and then over about 2 inches.  So, my bra didn't rub but yet, I could wear V neck shirts and, depending on the shirt, it was hidden. 

Oh and make sure you wear a bra 24 hours a day for the first several weeks.  That really helped with discomfort and you do not want the scar to stretch so, definitely keep the girls supported as much as possible. 

[cameragirl]

I was doing some research, and it looks like the majority of issues were related to the Power Ports by Bard. Starting around 2009, there are LOTS of complaints from nurses, doctors, and patients online of ports migrating under the skin, flipping the wrong way, having too much scar tissue, causing a high number of clots, vein hardening, and even catheters disconnecting and having to be fished out from various parts of the body. The incidence of complications with other ports seem to be much lower.

I asked the charge nurse in infusion today, and she said that they using Porta-Caths for most patients at their facility. (She's a hematology/chemo nurse.) I'm going to double check with the imaging department, but I don't have any reason for a specialized port.

[amcal]

Originally Posted by cameragirl 

I was doing some research, and it looks like the majority of issues were related to the Power Ports by Bard. Starting around 2009, there are LOTS of complaints from nurses, doctors, and patients online of ports migrating under the skin, flipping the wrong way, having too much scar tissue, causing a high number of clots, vein hardening, and even catheters disconnecting and having to be fished out from various parts of the body. The incidence of complications with other ports seem to be much lower.

I asked the charge nurse in infusion today, and she said that they using Porta-Caths for most patients at their facility. (She's a hematology/chemo nurse.) I'm going to double check with the imaging department, but I don't have any reason for a specialized port.

Yikes! I had the power port.  Eek!  Im glad I only had mine a short time.   Good luck with your treatment and whatever you decide with your port.

[cameragirl]

So the port is in. I ended up with a titanium Vaxcel port with valve. There is a lower incidence of complications with this type because of the construction, materials, and passive valve. Because it is valved, they can flush with saline, heparin, or a combination of both. I'll ask my OB which she prefers for now. Below is my blog post...long, I know. I left out a lot, too. Pics below, so fair warning if you're super squeamish. (They aren't bad.)



Today I had a procedure to install a port that will make blood draws and IVIG much easier. (And much less painful!) During my November infusion, the infusion nurses told me that it was time to consider a port as soon as possible. My veins were getting more difficult to access, and the damage to the veins made IV placement more painful. By the end of my three day set of infusions, I would be bruised, very sore, and without any good IV sites left. Having a nurse look at my feet and shoulders for an IV site was all the convincing that I needed.

I thought that getting a port might be an issue because of the pregnancy. When I told my neurologist's assistant that a port had been recommended by the nurses, the assistant said "okay, let's get you scheduled." Considering that it wasn't really urgent, it was the holiday season, and that neurology doesn't normally order ports, things moved pretty quickly. I had a surgery date scheduled, and we went from there. Well-meaning friends and family have asked if it was a good idea, if it was safe, or if it could wait. Every medical professional I have spoken to about the port said that it couldn't wait. They need good access to my veins, especially with me being pregnant. The risks of the procedure are outweighed by the benefits of having easy access to my veins for treatment and in case of emergencies.

The thought of having a surgical site near my face made me a little nervous. I am claustrophobic, and the idea of drapes over my face freaked me out. Luckily, I would be given conscious sedation to help with the nerves. Since I don't need chemo or radiation (the most common reason for a port), the radiologist chose a Vaxcel port with valve by Navilyst. I was draped, scrubbed, and had a local anesthetic injected into my chest and around the Jugular vein. The interventional radiologist made an incision above the Jugular, and in my chest wall. The catheter was run through the Internal Jugular, and down towards my heart. Through the incision in my chest, they made a pocket and sewed the port in place. The port was connected to the catheter, the catheter was flushed to test function, and the incisions were closed up. Unfortunately, my muscle tissue is very tough from having Stiff Person Syndrome, so I kept feeling pinching as the radiologist worked. They did their best to numb me and finish up as quickly as possible.

After they got a chest x-ray to verify placement (with my belly shielded well), I was brought back into the nurse's office to meet up with Adam. The radiology nurse gave me some grape juice to get my blood sugar up, and talked with us about caring for the incisions and port. I'll have to have the port flushed when I go in for my infusions every five weeks, or once every four weeks if it isn't being used. I'm covered up with gauze and Tegaderm, so I haven't seen what things look like yet. I'm interested to see how much of the port is visible under the skin. I was told to expect some pretty colorful bruising for awhile. Oh, and I can't shower for at least two days. After that, I'm supposed to cover the Tegaderm with plastic wrap until the incision heals. If anyone can figure that out logistically, please let me know. I have no clue how I could manage to pull that off. Sounds like sponge baths and a trip to the hairdresser for a wash or two.

Once we got out of the imaging center, it was time for food. Fasting for that long stinks normally, but it is rough being pregnant. We ended up at Fuddruckers to feast on what had to have been the best burger ever. I'm currently propped up in bed, watching crummy daytime television. So far the lower dose of Vicodin is making the pain manageable. I'm crossing my fingers and praying that it is tolerable tomorrow, when the bruising should show up.

All in all, I'm happy. Dealing with literal pain in the neck for a few days is better than dealing with stick after stick in my hands. (And soon, who knows where else.)

All bandaged up:


After removing the Tegaderm and gauze to change the dressing. This was done a little early because it was pulling the skin too much.


What it looks like inside:

[amcal]

Oh mama, I'm glad it's over.  I think you'll be so glad you got it.  I highly recommend Emla cream on the port site before its accessed.  I had a lot of discomfort and sensitivity so the emla cream was a Godsend.  Rest and take care.  

[cameragirl]

It's been a few weeks, and I had my port accessed for the first time for treatment. What an improvement! It was SO nice to get one stick instead of 6-7, and it was so nice to have my hands free and not in pain. Most of the swelling has gone down, so it it wasn't really painful. It stung for a few seconds, but bothered me less than a successful IV stick. The only downside is that the saline flush is a lot more noticeable, and I can taste the Heparin that they use to lock the port. Ick - that stuff is bitter and makes your mouth taste like you licked an aspirin.

[amcal]

Oh yes, the heparin.  What nasty tasting stuff!!!  Thank goodness is passes quickly.

How often do you have treatment?  Mine was daily and I got tired of being stuck so, I put emla cream on the port every morning before treatment.  Made a huge difference.  

I'm so glad you got your port and it's going well!  

[cameragirl]

It has been three days every five weeks, but I'll probably switch to weekly until after I have the baby. Otherwise there is a risk that I'll miss the entire dose when I've already hit a brick wall from medicine wearing off. The first stick stung a little bit, but the third was today and I didn't really feel it at all. Phenergan through the port is another strange one. It burns and tastes like swallowing a shot of cheap vodka.