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IV port installed today

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Posted 11/4/2014 3:51 AM (GMT 0)
Hi everyone—

Sorry I've been MIA for the past couple of months—hope you are all doing well. I have missed you! I have been swept away with insurance issues and trying desperately to wrap up a few work-related things before I started abx treatment tomorrow.

Got my port installed this AM—was an all-day affair. The pain meds are wearing off so I'm in some pain now but the procedure went rather well. But you should have seen the prep in the OR. Since the procedure involved the heart/main artery, they had layers and layers and layers of protection and sterilization. It took 4 nurses to set it up. And the anesthesia wasn't being very effective so they doubled both of them (can't remember what they gave me), which worried me that I would have a hard time coming out of it but I woke right up and I'm still awake/ everything really well and the good news is the incisions and the port are so much smaller than I thought they would be. When the swelling goes down it will look like I have 1" thick quarter under my skin. I was worried this thing would be the size of a cigarette box so I'm happy about that. My neck is sore where they threaded the catheter through but they tell me I will get used to it.

Unfortunately, we got some problems. When I spoke with the hospital nurse, she told me a nurse has to come daily to administer meds; Home Health care says if I need daily nurse care that I don't qualify for their services. But then I told them both to get on the phone with each other and work it out. The hospital nurse did call HHC but spoke with my account mgr—not the nurse. So that discussion was futile (but I didn't know it at the time). And, this didn't happen until Fri so I had no opportunity to follow up.

I get to the hospital, they're prepping me and there is still confusion. Finally, I'm told that they were going to send me home with an accessible needle and the nurse would come only once a week to change out that needle, and that I would be injecting myself daily though the end of the tube—like an IV that sticks out of your arm. But that defeats the whole reason I opted for a port over a picc! I can't get it wet, can't shower and can't do any activities. And they're telling me this is my life for 18 mos? No flipping way. Why is this so complicated? Why, after all this time, they have still screwed this up for me? I was originally scheduled to have a pick done back in Aug but my insurance dropped me the day before the procedure… I've been battling them ever since and finally got the procedure rescheduled for a port since this is long-term treatment (over 12 mos.) and I want to be able to go swimming, etc.

So, I had the procedure done but this may be my reality for the next month, which I found out is all that insurance is covering but they're going to have to pay for a nurse to come every day—or I am going to have to find a way to go to them to have it done.

I'm exhausted. The nurse comes tomorrow to administer the first dose… wish me luck!

-p
Posted 11/4/2014 11:05 AM (GMT 0)
Wow, it is such a shame that the procedure and insurance business has been so stressful. I hope everything works out.
Posted 11/4/2014 11:46 AM (GMT 0)
Wow! That really was a mess to straighten out! Why do they make things so difficult?! I wish you luck as you fight this terrible illness. Please keep us updated.

Xoxoxo
Posted 11/4/2014 7:24 PM (GMT 0)
The access needle (Hubor needle, IIRC) usually does stay attached to the port for a week. But you can get trained on how to remove/insert the needle yourself, then you can remove and reinsert as needed to accommodate your lifestyle (within reason, LOL! - shouldn't re-access the port with a new needle every day, that would wear out the membrane too quickly I think...).
Posted 11/4/2014 10:20 PM (GMT 0)
Pirouette! I'm so glad you posted!! I've been wondering how you were doing!

I'm glad that things went well with the picc line installation (not sure what else to call it! Sorry!) - I sure hope that you can get this straightened out with the insurance company!

Remember you have the right to appeal the ins. co's decisions.

Here are some links that may help provide information on how to fight this if you have to:

www.mdjunction.com/forums/lyme-disease-support-forums/tips/1390852-insurance-links-to-fight-for-payment

www.lymedisease.org/resources/insurance.html

lymeunderground.com/fighting-back-on-insurance-denials/

I hope you find the information you need to fight this!
Posted 11/4/2014 11:31 PM (GMT 0)
Thank you everyone—

Thanks for the links Traveler! I am going to look into those. It's good to be back.

I have some clarity with the situation now. Looks like there are two conditions—one is my current post-op condition where I have two open wounds where they insert the port and the catheter; and the recondition condition is when the wounds have healed and everything is closed up. But in both conditions, I will have what they call an "accessible port' which means the needle is kind of a permanent fixture and meds are fed via syringe through an attached line to the needle. But until the wounds are healed and closed up, I cannot shower. After that, I can tape plastic over it and take showers.

But, no swimming and limited activities, which is NOT what we all discussed. This device is called "Smart Port", which seems to be the newest device…? Anyway, I just have to accept the situation and deal with it. Maybe this is not what I should be worried about and it's the long-term coverage that needs my attention.

Razzle—yes, Huber needle. And yes, that's what the nurse said, that I wouldn't want to be poking the port membrane daily. But access needle does stay in all the time since my doses are 5 days/wk and they will change the needle out once a week. That is the part that they didn't tell me. But she said I could go without the needle over the weekend and they could remove the needle on Friday and put it back in on Monday. It is still a better option than a picc line, which is larger and less permanent and flimsier than the port… and more prone to problems.

I did have a small reaction to the first dose of Rocephin (actually they gave me the generic form)—eyes itched and felt close to fainting. But we'll see what happens with the 2nd dose tomorrow. Other than that no issues. The port area still hurts like mad.

I am also a little concerned about contraindications with the heparin they also gave me and herbs? I still want to continue with the Byron White formulas I'm taking along with the japanese knotweed and 3-4 others I'm taking for detox.

-p
Posted 11/5/2014 2:59 AM (GMT 0)
I had a port in for over a year.. It actually went quite smooth after the first two weeks. I worried about getting it wet for the first few weeks and then it sealed itself off and was fine. I did not swim during the year I had it as I just didn't want to complicate the situation. Wasn't sure if the chlorine in the pool would aggravate it. I was on IV rocephin for one year and it really cleared a lot of my neuro symptoms up.. Best of luck to you.
Posted 11/5/2014 6:31 PM (GMT 0)
We are happy to have you back - although we will definitely celebrate when you are healed and no longer need us too!!

I'm very hopeful that those links will be helpful for you!

Here's hoping that you will handle the meds better today!!!
Posted 11/6/2014 12:43 AM (GMT 0)
Thanks happyjo and sf charm—I am very hopeful that this will help. It better—after all the hassle!

Good to be back Traveler! ;)

I had my second dose today - all is well. Just a little itchiness but tolerating the Rocephin well thankfully. And learned how to use myself, which is fairly straightforward. Except that I really need to get the digestive issues back under control and elevate my detox program. It's just so much and I'm overwhelmed and getting cranky. But I'll evolve into "action" once this port site heals a bit. VERY painful and difficult to sleep. One thing at a time…

-p
Posted 11/6/2014 4:53 PM (GMT 0)
Hang in there, Pirouette!! I know that you will make it! As you said, one thing at a time!! :-)
Posted 11/6/2014 5:34 PM (GMT 0)
Thanks Traveler!
Had a good night's sleep so things are looking up. ;)

-p
Posted 11/16/2014 5:36 PM (GMT 0)
Hooooboy. I finally started herxing I think from the IV. Cried the entire day yesterday—had trouble keeping my eyes open (too much light stimulation) and pounding in my ears—can't describe that… like someone taking a GIGANTIC 12 foot Q-tip and starts pounding it into my ears, knocking into my brain over and over and over. So strange. But hip and muscle pain has gone away for some reason so that's good.

Also, nurse came to change out needle at the request of her supervisor, who suggested that I was skittish about needles (which is true) but what I now realize is that they're considering the pain I'm feeling psychomatic because changing the needle "shouldn't hurt that much" but in the same breath they tell me that I've only had the IV port for two wks so yes, it's normal for it to hurt. Anyway, the nurse slammed the needle into me without telling me what she was doing and when I yelled out, she realized that this is real pain. #%^&@%& I am so pissed about that. So, another meltdown but I couldn't cry too hard because it hurt! LOL

Orchid Rain—Didn't occur to me but I think you're right—it was a herx to the IV finally. But that is a good thing because I hadn't noticed any reaction to the Rocephin IV I've had for the past 2 wks and I was getting a little nervous. I had not responded to the AL-Complex I was taking for lyme and got worried that the abx weren't effective either. But maybe it is!

I can deal with the meltdowns and herxing if I know there is a reason for it. But boy… that was a full-on 32-hr meltdown. Kind of funny in retrospect. Hope today is a little less dramatic. ;) I had a tough time reading and doing things yesterday, which always helps to distract me but was able to watch one of those Autoimmune summit videos this AM so have a good feeling about today.

-p
Posted 11/16/2014 11:03 PM (GMT 0)
I hope today has been a better day for you P.

I think I'd be calling the nurse's supervisor and explaining that you are in real pain and it make no difference what they think about your condition. If they continue to cause your pain levels to rise, there are places that you can report them to - and don't forget the power of the internet!! Negative comments can be logged onto their site, FB page, or whatever you can find - including a local newpapers' page! devil

Don't mess with a Lyme patient!!! We have anger issues! LOL!!!
Posted 11/17/2014 12:36 AM (GMT 0)
T -

You are right. Everything was in slo-mo that day and I wish I had responded right on the spot. But I will be clear to the next nurse that if they try that again, they might have to fend off my lyme rage!!

-p
Posted 11/17/2014 4:44 PM (GMT 0)
I would encourage you to still call the nurse's supervisor and speak to her. You are calm now and can explain things better, but be sure to tell them that you will not accept them abusing you in any manner. Remember, you are paying them, so you have the leverage here.
Posted 11/17/2014 6:07 PM (GMT 0)
P-

It sounds like the port is horrible. Do you think a PICC may have been better?

When should you start to feel some relief? Did the LLMD say?

(((Hugs)))
Posted 11/19/2014 9:20 PM (GMT 0)
Traveler—

You're right, thank you. I struggle so much with everything in-between the rage and being braindead. I used to have such a great way with people and now I am can barely engage.

But—I think we have discovered the source of the (REAL) pain—there is fluid leaking from the needle puncture every time the nurse changes the needle so we think there is an issue with the location (acckk) and it's causing inflammation and fluid build up. You should see it—it's all yellow, green band purple and I've had a nasty itchy red blistery reaction to the latex of the bandage cover thing they apply over it so I'm a mess.

They want me to go back to the hospital and have the doc who installed it check it out—the nurse thinks there is a location issue. If she's right, it means opening me back up to reposition? Ugghh. Of course, this was yesterday AM when we talked with the hospital and the hospital has still not called me back for an appt.

The good news is the port itself is functioning well and there does not appear to be any infection. AND—i've taken like, 3 showers since I have no needle and tube hanging out right now! LIFE IS BEAUTIFUL! Also, for some reason the area doesn't hurt at all today. So grateful for that.

Thanks Utahgal! Sorry I missed your note.
We decided on the port instead of the PICC because of the long-term aspect of treatment. Everyone I've spoken with verified that the port has many fewer functional issues, much less chance of infection. There are some posters on this forum who have had success with the PICC, though.

I'm not sure when I'll feel relief from the port—especially if I have to have it repositioned. But from everything I've read on cancer forums (the port is typically installed for chemo) I shouldn't be having problems after 2 wks.

But if you're asking when I'll have relief from the treatment—not sure about that, either. I'm on a very low Rocephin dose right now and I'm starting to feel the effects already so once she ramps up the doses and adds in more abx for the different forms (cyst, intra-cellular) I think that's when the real party starts.. I am not really looking forward to it but I know it's necessary.

PLUS… my insurance company just informed me they are no longer participating in a PPO, which is one of two plans my LLMD participates in. So, now I get to start all over with the insurance application. That gave me breakdown #7 for the week so far.

It's been such a long, difficult road just to get to this point so I am grateful for the treatment—whatever it is. And THANK GOD for this forum. ;)

And thanks for your hug! I needed it.

-p
Posted 11/19/2014 9:50 PM (GMT 0)
One more thing before I forget…

Have been battling a little bit of nausea for the past week. The first day of it was bad but the subsequent days are kind of slight but annoying and making my appetite and eating issues even more problematic.

Made some peppermint sun tea, which is nice. But didn't help. Started chewing peppermint gum and it helped!! fyi.

-p
Posted 11/20/2014 6:29 PM (GMT 0)
You can also try ginger tea. That has helped my nausea and digestion issues tremendously!

I'm so sorry about all the issues that you have had to face while you feel so compromised, P! I really can't imagine it - really. I think I'll stick to the herbs! LOL!

I have to deal with insurance changes myself and am feeling more than a bit skeptical that I can handle it all! But I will do my best and just live with it - I do have a bit of a back up - hubby has agreed to help some when I'm really stumped. Good thing!!turn

Hang in there, P. You are a very strong woman and will get through this as well - and then laugh about it later! Although I do hope that there is a way around you having to go in and have that port repositioned. Ouch.

(((((hugs)))))
Posted 11/20/2014 8:46 PM (GMT 0)
Thanks Traveler—I always forget about the ginger. I have some frozen pellets that I bought in the store awhile back and can add that to my mint tea. That should be nice.

Well, I'm not so sure about this abx journey but it's also the very beginning of it so I remind myself constantly that I don't have all the info yet. Being patient is such a difficult thing especially when you're bombarded from all directions like we so often are. But every time something falls apart, which is often ;) I remind myself that I still have quite a bit going in the right direction and try to focus on things I CAN influence toward that direction and decide to deal with the things that are in my way another day. Those are my good days. My bad days, well, it gets messy. ;)

Thanks for the hugs!!

-p
Posted 11/20/2014 9:00 PM (GMT 0)
LOL! Heck, my bad days get messy, and I've not got an IV to worry about!! So don't worry about it and remember we are all here for you!!
Posted 11/20/2014 9:05 PM (GMT 0)
Yeah—I have no idea what I would do without this forum. That much is certain.

((((hugs!!)))

-p
Posted 11/21/2014 1:16 AM (GMT 0)
Many (((((((Hugs))))))) to you too, P! Together we will all get through this!
Posted 12/28/2014 6:02 PM (GMT 0)
UPDATE:

I had some setbacks —continued fluid discharge and some bleeding when I de-accessed (pulled the huber needle out for the weekend) that was resolved by asking the nurses not to shove the needle in, go slowly and more gently. Sheesh.
Thus, the area was less aggravated and swelling was kept at bay.

I did have a couple recent instances where the nurse could not get a good blood return (when they pull back on the syringe—it should pull blood backward from the artery through the port and into the catheter and you should see it seep into the syringe). Not getting a good blood return is a sign that the catheter may have slipped out of place or there's a malfunction in the port. However, I could still get good results when I did my infusions so we knew that the port and catheter were OK. Perhaps the blood had clotted—so we pumped in more heparin which did not help. I was not interested in her re-accessing me and wanted to wait a day to see if I could get blood return the next day, which I did. Not sure why this is happening.

The nurses have also been challenged to draw blood for labs through the port successfully due to my blood clotting up. However, I take quite a bit of heparin, plus I'm taking BW tinctures (AL-Complex, A-Bart and A-Babs) and eating salads. So my blood should run like a river. Mysterious and the home health care nurses are clueless and not as experienced with the ports as they professed to be, I'm afraid.

No infections so far and due to increased fatigue lately and being a little busier (and stressed) due to the holidays I don't attempt to shower Wed, Thur or Fri so no risk of getting the bandaging wet and having to get re-accessed. But I did buy some "waterproof" covers for the bandages that I will try out soon.

Still tolerating the Ceftriaxone well but had my monthly appt w/ the LLMD's nurse last week and she said I'm not doing well enough (due to the psychoneuro chaos) to increase dose yet. I was so, so upset. It's wise, but I immediately leaped to the long term schedule and the thought of dragging this treatment out further is just simply spirit-breaking. So, I left determined to do more to detox and if nothing else, that will get my butt into the bathtub for the soaks (I battle neurosis about having to clean the tub before ea bath even though I know it doesn't need it—which is so exasperating and yet another sometimes debiliting lymebrain problem). But I think the soaks and the coffee enemas are the answer.

Now, with the gall stone issue (I posted about a couple days ago) I have to refocus on trying to dissolve them, which will take some energy and commitment. So, first things first.

-p

Post Edited (Pirouette) : 12/28/2014 11:50:51 AM (GMT-7)

Posted 12/28/2014 6:47 PM (GMT 0)
I'm so sorry you had such a disappointing appt, and the other issues that you are going through, P! But you know what you need to do, and are strong enough to get through this!!

Once you realize what you have to do first, then second - and it sounds like you have - then you can figure a plan of attack and get started - so good for you!!! You'll make it! :-)
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