Topic: Port not infusing at all now!! {Update at end]
Rumigirl
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I posted in July about the problems I have been having with my port. I've had it for 6 years this coming October. I've taken really good care of it. I has only had a fraction of the needle sticks that it should be able to withstand.
I need it for my 3 times per month IVIG, although that could possibly happen by peripheral line (happening right now). I also probably need to go back on multiple IV's, as I've inadvertently been off treatment since February.
It's been extremely sluggish for a while now, and CathFlo didn't help much, if at all. I can try CathFlo another time on Sunday, but won't have a lot of time in which to have it dwell, due to my nurse's schedule. Then, she's away for 3 1/2 weeks on vacation. And I haven't had a back-up nurse in quite a while, as I've had too many bad nurses in the past.
Today, she couldn't flush it with a full 10 ML of dextrose, so we had to go with a peripheral line. She thinks that the port is no longer able to be used, and that she wouldn't even be able to push the CathFlo in on Sunday (we didn't have any on hand today, unfortunately). So if it doesn't work/help on Sunday, which is a short time we'll have for the dwell, as she can't come until 6 pm, & the IVIG infusion is 4 hours.
At that point, I would have to go back to the surgeon to see what is up. But the horrible part is that if the port is kaput, which it looks like, I would have to have it removed and replaced or do without a central line.
Since I have the horrible Complex Regional Pain Syndrome, any surgery is a big risk in spreading to yet another area. I have it in my hands already (close by), plus my legs and buttocks.
I can't catch a break here! So now I have: full-blown, severe neurological Lyme & co-infections to the point of being almost completely non-functional, Complex Regional Pain Syndrome in numerous areas with horrible pain, breast cancer, and now the port going kaput with
all of the problems that that entails!! Plus, too many other issues to go into here. I'm just barely hanging in there as it is with the pain and suffering every which way.
If any one who knows about ports has any other ideas, please let me know! I'm not sure that there are any, however. The only other idea I have is to try with the CathFlo when there is more time to have it dwell and to do 2 doses, if necessary. However, my nurse has to go
by the protocols of the infusion company, which doesn't allow overnight dwells (or did we do it already?? I have to ask her). But if she can't even push it in (what seems to be happening), that's a moot point.
I need this extra problem like a hole in the head! Even any needle sticks are a risk with CRPS, although so far I've been ok with that.
I've been really wanting all of it to be over, for all of it just to end, if I can't catch a break. All I have is pain, suffering, and endless problems. Total full body sweats all day and night, due to being off all hormones, plus trying Zoloft at 1/2 dose, which I can't handle.
Sorry for the rant, I am really at the end of what I can handle.
[ 09-08-2016, 09:14 PM: Message edited by: Rumigirl ]
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Horrible, just horrible. I'm so sorry to hear of all this suffering.
I hope someone here will have some ideas for you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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me
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Oh, Rumigirl. I'm soooo sorry. You have been in my prayers.
I'm not sure if this is an option for you, but I will put it out there. I use butterfly needles (very small ones) for daily infusions. If your doctor is on board, maybe you could do a few trial infusions like this? The gauge of the butterfly needle I use is extremely small (I don't know what it is).
I will keep thinking. Hopefully other people will have ideas. I'm so sorry you are going through all of this. I'm glad you came back to the forum for support.
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Rumigirl
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Well, we have a plan:
The infusion company is delivering 2 doses of CathFlo tomorrow, and my nurse will come back at 5 pm and try first to infuse some saline and pull it back out. She couldn't even do that today; it was extremely resistant to any going in at all, and none would come back out at all. If she can't get any in and back out again, which you have
to do with the CathFlo after it has dwelled in the line, she won't even try to infuse the 2.2 ml of CathFlo. Because, if she put it in, and it won't come out, I'd have to have surgery the same day or next day to remove the port, so it doesn't go into my bloodstream and cause an embolism!
If she can infuse the saline and therefore can do the CathFlo, we'll let it dwell for up to 2 hours & remove it. If there still is no blood return, we'll do a second dose & let it dwell for up to 2 hours.
So either it will work tomorrow, or it won't, and I'll then have to figure out where to go from there. Possibly first go back to the surgeon to have it looked at (have to see how they do that). But if we can't do the CathFlo, most likely the port is kaput.
Time to pray for it to work! In the past I've had to do 2 doses of CathFlo at a time. But it has never been this completely unworkable before, and for a while, too. Lord have mercy, please!
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Rumigirl
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Thank you, Lymetoo and me. That's an idea, me about the butterfly needles. It's just that I hate to do too many needle sticks, due to the CRPS issue. Not to mention which, my poor veins have been stuck so many times. But it's not even that, it's the blasted CRPS. Sigh.
And, in spite of what I said, and have been feeling, I know that I can't act on it. I know it is not ok. It's just that I can only take so much, and the medical/pain, etc. issues are non-stop, and not improving.
BTW, I stopped the 1/2 dose of zoloft, due to the horrific sweating. But I think that it is also due to no hormones at all. Plus, I've had a lot of sweating, due to the infections, too. It's exhausting when it is full-body, non-stop day and night.
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I'll step up the prayers, Rumi!! I know the pain has got to be so intense.
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bluelyme
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You are in my prayers rumi.. ok you have a good plan for the port ...one thing that got my port going after a little clog was this technique a young nurse did at the hospital...
we couldnt get the saline to move ...a little clot was seen ....we pulled back and got a vacuum....then we attache hep and it sucked it back in and line opened up....
Have her pull on syrynge and shoot the cathflow in there to work its tenderizor majik...
on the pain and treatment .i dont know if cordaylis or kratom would touch what you deal with but rick simpson oil could help on all fronts of your war ...
sending prayers your way...iv curcumin can be had from civic pharm and is great for inflammation and anticancer. I dont know how cool your doctors are or what state you are in but i pray you find peace and relief
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Rumigirl
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Bless you guys, thank you so much!! Thank you for your prayers, your concern, and your suggestions. Yes, I pray that it works tomorrow.
blue, that's a good idea. The problem is, the nurse doesn't want to infuse the CathFlo if we can't pull any saline out, or even infuse it. If we could get it in, then it could work, hopefully. But she doesn't want to risk not being able to get it out, as then it
could be so risky as to need quick surgery to take out the port. That part wouldn't be a good plan. It's never been this resistant to infusing or pulling blood/saline out before.
I do have various meds for pain, but, except for topical pain cream, I don't take it until evening. By the time I take enough to help with the pain, I'm completely out of it. This isn't narcotics, it's Lyrica, gabapentin, or tiny dose of compounded ketamine.
The natural stuff I've taken, including kratom, doesn't do it; this pain is industrial grade. I'm running low on the pain cream, and insurance won't cover anything compounded anymore. I could fight it----again! But it would take a lot of fighting through the
state Attorney General's office, and even then, the best I could hope for is 3 more month's worth. They want me to try other meds, when I've already expained in a complaint through the state AG's that I've already tried everything that might work, and expained the results. They don't care, of course.
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sammy
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Rumi,
You can flush cathflo through your port, it dissipates quickly mixing in the body's circulation. (It does not act as a systemic drug, too dilute/ weak). So no more worry of imminent surgery.
You may consider contacting your surgeon though if your home health nurse is unable to get the port working soon.
The doctor can refer you to the hospital IV therapy team for evaluation and treatment. They can give you an infusion of the same 2mg dose of cathflo mixed in 100ml normal saline dripped in slowly if your port will allow.
If your port is too clogged, they can use a stopcock to help gradually, gently, work the cathflo in and get it functioning again.
They can also do imaging like dye studies to make sure that it truly is clogged because there is something called "pinch off syndrome" that causes the same symptoms.
Hugs and prayers!
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me
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Rumi, How are you? Praying for you.
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Rumigirl
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[Sorry this is so long!!]
Today was a mixed bag with this. When my nurse came and accessed me (put in a new needle), we were able to infuse the saline flush, albeit with resistance (but better), and we were able to withdraw it. Whew! Then she infused the CathFlo. My understanding from yesterday was that we would let it dwell for 2 hours, see how it helped, or not, and then do another dose for up to 2 hours, if needed.
But after she infused it, she said that she had another patient, so we would let it dwell for 1 hour, and then pull it out. I wasn't so happy about this, but didn't have a choice. She said that she told me yesterday that she had another patient, but I wasn't aware of that at all.
After an hour, we were able to get a blood return, which supposedly is the parameter that you are looking for. But I was looking for it to lose the resistance, ideally. We were then able to flush with saline and heparin, again with resistance, but better than it had been.
I wanted to go further with it and do another dose, but she wouldn't. And as we talked, she kind of yelled at me, because she thought that I wasn't listening. I explained that I was listening and do get it. She was trying to tell me, it's not going to get better; I need a new port.
I was reiterating to her that I get it, but my dilemma is that I can not afford a surgery now to have the old one taken out and a new one put in, as it could easily spread the CRPS to yet another area.
No one who hasn't had CRPS, or lived with someone who has, or is like this community, where we've all suffered plenty gets the level of pain that this is. I have been on the brink of suicide way too often, as it makes me want to jump out a window! (No, I won't jump out a window!).
In the end she apologized for yelling at me (sort of). She usually is extremely easy-going, but very occasionally gets frustrated like this. Mostly, she is golden. She said, "You are asking me to make it work, and it's like an old car that won't work anymore."
I will make an appt to go to the surgeon's and have them assess it. It is working right now, even if it isn't great, and even this level of working may not last long. And there likely isn't much they can do there.
But I'm a little puzzled why she doesn't understand my situation, and why we can't just use it as long as we still can, and go from there. I'm willing to baby it along, as long as it will cooperate, and use CathFlo as needed. But she says the CathFlo can't fix it all the way; I get it.
So it's a relief that we got this far, but frustrating that we couldn't/didn't go further, and that we reached this impasse. I'm sure that she will use it, as long as it still works, and do a peripheral line when it doesn't, as we did yesterday. That's not ideal either, but is one way to go when necessary.
Thank you, everyone for your thoughts and prayers. Clearly, this will be an on-going concern.
sammy, I'm sure that you will find it hard to believe that she was being as hard-nosed as she was. I know she was trying to get me to understand that it is pretty much at the end of it's useful life. But I will nurse it along, as long as she will let me, which she better had! I have so much on my plate right now, it just isn't funny! Thank you, all.
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Good to hear from you, Rumi. I totally understand your viewpoint and hers. Sad that it can't just start working RIGHT again.
Maybe the surgeon will have some solutions.
We'll keep the prayers going!
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sammy
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Rumi, between hospitalizations, ER visits, and home health nightmares, I've had more than my fair share of uncaring and incompetent nurses. So I understand! It's truly sad...
I'm sorry that your nurse is not listening to you. She clearly has not taken the time to learn about CRPS, and is not considering how it impacts your daily life. That truly is not in your best interest to just give up and get surgery when the port may be salvaged...
I hope and pray that you will get help from the surgeon. That they will be able to restore the functioning of your port. They do not usually want to waste their time with unnecessary surgery. They would rather fix what you have while they can.
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me
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Thank you for the update, Rumi. I'm glad that that you were able to pull from the port. I'm terribly sorry your nurse took out the frustration on you--not what you needed. So here's a big hug instead
Still praying for you.
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Sounds rough. No idea whether this idea would help you with pain, but I get a diminishing of pain everywhere just by taking capsules of turmeric a couple times a day. I get the powder in bulk at the health food store and dip empty 00-size capsules into it.
Also, to fight breast cancer, I hope you have read through or can read through all posted notes from Ty Bollinger's two series on treating cancer naturally. Many people have made it back from stage 4 cancer level, including breast cancer.
If you do the search for Quest for the Cures and A Global Quest, the names of the two series, you should find the notes.
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Rumigirl
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Thank you, everyone. I didn't have what it takes to call the surgeon's office today. I had a horrible migraine, probably largely due to all this agita and the stuff with the nurse on top of everything else.
Usually, she is wonderful and spot on. BUT, she is much younger, very healthy and active. That's not the problem, of course, but although she understands that I have an inordinate amount on my plate now, she doesn't really get the predicament that I'm in with the port problem. Yes, she's heard me talk about it, but it is so far from her experience of life that she doesn't get it.
She works with patients with ports a lot, and said that often they don't even last a year! And then they need to get a new one. That isn't right!
sammy, yes, I have to see the surgeon & his staff to assess the port. He will be surprised that I still have it, as he wanted me to use it and then not need it anymore. But that isn't my situation.
Thank you all for your prayers. It is so much appreciated. Normal, healthy people wouldn't really understand this, unless they've gone through a hard time, too.
Robin, I used to take tumeric, but before I had the CRPS. I take Boswellia daily, which helps in general with pain and migraines, but not with the CRPS. I could try it again, but doubt that it would help a lot with this.
On the breast cancer issue, I did go through all of Ty Bollinger's info multiple times. What I'm doing for it is the program that I taught to my clients for decades that I learned from Dr. William Kelley. It involves high-dose pancreatic enzymes many times per day on an empty stomach, plus other supplements. It also involves a lot of detox, which I do daily (coffee enemas, colon cleanse, liver/gallbladder cleanse (minus my gallbladder), etc
Over time, it will work, but I had a real scare last week, as the microcalcifications became completely swollen and big. I know that the tumor getting bigger initially is to be expected. But when it happens to you, and you don't have x-ray vision, it's scary! I went off the enzymes for 3 days, and the swelling went down a lot.
Now I've resumed them. I need to see if a doctor that used to work with Dr. Nicholas Gonzales will agree to monitor me with ultrasounds, etc. My oncologist would monitor me, but she wouldn't have a clue about the expected reactions of the program. Plus, I don't want continual mammograms to monitor me---radiation!
To be continued on the port issue and the cancer issue. It's unbelievable that I have so many blasted issues simultaneously.
[ 09-10-2016, 08:31 PM: Message edited by: Rumigirl ]
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In 'my' hospital in the Netherlands there is a special ward, oncology daycare, where the nurses are extremely experienced in working with ports and PICC-lines. They refuse to give up on your CVC unless it is absolutely hopeless. Does your hospital have a ward like that where you could ask for help?
With all due respect, your nurse doesn't seem very motivated to make it work. One year is way too short for a port.
What Sammy says is right. Sometimes a kink in the line can cause the same problem. You could try (if you haven't done so already) to lie flat on your back while flushing the port. Another trick is to cough while flushing.
If it is a blood clot or an obstruction you could try urokinase instead of Cathflo and/or an extended dwell-time (leave it overnight). Either way you should get the best treatment to get it functioning again. And that shouldn't depend on your nurse's schedule and mood, but on what's best for YOU and your port. Surgery should be the last option.
Take care!
[ 09-10-2016, 03:40 AM: Message edited by: Notti ]
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Rumigirl
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Thank you, Notti, I agree completely! Thank you for the information, too, including about the urokinase, which I've heard about, but never have had.
I am still really angry and upset at the nurse for reneging on our plan of action, her unwillingness to do more to get it working better, and her taking her fustration and anger out on me. It was totally uncalled for.
She took another patient in the time that she had committed to me, and was angry that I was saying that we had agreed to spend more dwell time, and time for a second dose, if necessary.
Clearly I cannot depend on her to do what is needed to get and keep my port working properly. At the same time, I can't afford to stand up to her too much about it, because in most ways she has been a great nurse, and I have no one else to replace her.
It is extremely difficult to find someone as good as she is in other ways. But I'm fed up with being dependent on the whims of nurses, infusion companies, the insurance company, and on and on.
Yesterday, when we went to access my port (put the new needle in), we discovered that we had no huber needles left!! I was stunned. It is her job to assess what supplies we need for the delivery each month. Clearly, she was not really doing that with much care.
I said that there should ALWAYS be a bare minimum of 3 extra of everything, because you never know what is going to go wrong, so that we need extra of something. She should know this. Once again, she seems to be taking the easy way out and shirking this duty. I wasn't blaming her, as that would be counter-productive. But it leaves me feeling like I can't depend on her to do her job well.
My next step is to go to the surgeon's and have the port assessed. But going forward after that, I have to find somewhere to go when I need the CathFlo or urokinase. The surgeon's is quite a ways away, and I don't think they'd want to do that on an on-going basis.
Today I got yet another bogus response from the insurance company, which is not processing and paying my out-of-network claims across the board. Yesterday similar for another claim.
I made a complaint to the State Attorney General's office, and they are continuing this pattern even with the claims in question. They are depending on my giving up. It takes endless letters and calls repeatedly for every single claim. I can't cope with this much BS on and on into the sunset. (I know, this is another topic, just fed up).
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Would it be an option for you to do the infusions and maintenance of the port yourself? I don't know if your infusion and/or insurance company would allow you to work without a nurse?
You have probably learned a lot already and there is so much info online. If you can work accurately and systematically you can be the best nurse you've ever had.
When things calm down a bit, you could study the protocols and when you feel confident enough you could consider giving it a try.
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Rumigirl
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quote:Originally posted by Notti: Would it be an option for you to do the infusions and maintenance of the port yourself? I don't know if your infusion and/or insurance company would allow you to work without a nurse?
You have probably learned a lot already and there is so much info online. If you can work accurately and systematically you can be the best nurse you've ever had.
When things calm down a bit, you could study the protocols and when you feel confident enough you could consider giving it a try.
Notti, thank you for the suggestion. I have wanted to do that for a very long time. It would be very difficult, at best, to pull that off (not because I couldn't do it). The infusion company certainly would't allow it. I used to think that the doctor wouldn't allow it.
Now he might, not sure. But the way things are set up here, I'm not sure where I could get the meds and supplies without being tied to the company also supplying the nurse. I can try to figure it out to see if it's possible.
Has anyone here ever done it with IVIG?? I've done it for years with other meds, but that is different and usual. Supposedly, the worry is with IVIG that at any time you could get a bad reaction. But the truth is, I've been getting it for years, and only had a bad reaction in the first week, when I was given a loading dose (& ended up in the ER with seemingly aseptic meningitis.
I learned how to access myself (put in a new needle) once years ago, but then never did it again. The nurse who taught me left the company right after that and wasn't available to supervise me doing it again. We both were sweating bullets as I tried it!! I did ok.
But my vision is bad, our mirrors are bad (I used a hand mirror on my desk), and my eye to hand coordination isn't the best. I'd have to have a nurse who's willing to teach me and oversee me again, which would be strictly without telling the infusion company!
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Rumigirl
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As a further update to the situation: I decided that I had to speak up to the nurse about her having yelled at me. It was the third time, over a period of time, that she had done that.
It went horribly!!! She listened to me, but said that we couldn't work together anymore! She said, "I apologized," which she did at the end. But she was really vicious with her anger, saying that I wasn't listening, which I was! It was she who wasn't listening!!
She did not back down on the fact that we couldn't work together anymore, except to say that she would think about it. But it didn't sound promising. I pleaded with her to no avail.
The reason I did so was because with the exception of getting so mad at me 3 times (each time for no good reason), she has been stellar. It is next to impossible to find a nurse as good as she is. Usually, she is very laid back and easy going.
I was horribly upset after that and wished that I hadn't said anything about it, knowing that I am dependent on her, and that I have no back up nurse, and no one to train another nurse, besides myself. The company is no good at it and they are located half way across the country, so don't see these nurses.
She was going on vacation for 3 1/2 weeks the next day, so I am hoping that that time away will soften her stance on this. I haven't heard from the infusion company, which leads me to believe that she hasn't called them to tell them. To be continued. I'm so tired of all this mess; it's endless, it seems. Thank you for listening (if you've made it through this long post and thread!).
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I don't think it's a healthy relationship if you have no freedom to say what you think or want. You are the patient. Your ideas and wishes should always be respected. It's not good that you are afraid to speak up because you are dependent on her.
You do have to feel confident about self-administering before you start. Others have done it though, also with IVIg. In the Netherlands it's quite common for patients who use IVIg long term to self-infuse because it gives a lot more freedom and it is also cheaper (and the insurance companies like that, of course.) If you can be trained properly you can learn to do it with confidence and the nervousness will subside.
If you haven't had an adverse reaction to the IVIg in all these years, the chance that you are going to react in the future is very small. It's good to have two Epipens at hand, just in case.
Is there someone who could stay with you during the infusions? A family member or a friend, for example. Or even a volunteer who can be your 'buddy' and keep you company.
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bluelyme
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Rumi .my heart goes out to you ..my nurse friend is thinking of retiring and she is the only one who has helped with access. Etc ..
the young bucks at er were willing to try the stopcock vacuum method with cathflo that sam talked about ?..dont give in ..vunerable and tired doesnt mean meek and weak...you are a hero to me and others ...keep us posted
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me
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Geez, rumigirl. I am so sorry. Big, gentle hugs
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Rumigirl
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Notti, Of course it isn't really a healthy thing to not be able to speak up after my nurse has gone ballistic on me! Me, of all people. You couldn't find a more conscientous, knowledgeable, and dedicated patient. It's totally unprofessional for a nurse to do that. I couldn't imagine ever doing such a thing with a client (I was a health care professional for many decades).
She was saying, well, I apologized, what do you want? Yes, she apologized after she went ballistic, but that doesn't make it ok. And esp since it was the 3rd time that she had done that over a period of time.
It is sooo hard to find a good port nurse though. Next to impossible. I was talking to my husband about what you said and trying to see if someone would let me do it myself. He said, "But not with a nearly 6 year old port that isn't working well; you need an experienced port nurse." He definitely has a point there. But she wasn't interested in going all the way to make it work, although she did try. She just wasn't willing to implement the plan we had spent so much time putting together. Grrrr.
Thank you blue and me, I certainly AM NOT meek and weak! I would have died long ago if I were. But sometimes it seems that I have to eat it and not speak up, which, no, isn't good. To be continued.
BTW, on Sunday night, after I spoke up, my husband pointed out that it was probably a cultural thing, as in the culture she grew up with "saving face" is all important. I looked it up and saw how all important that is in that culture. Plus, looked up about that particular culture and anger and found a lot of relevance.
A massage therapist that I've worked with on and off for decades is also from that culture. Although we get along well and care about each other, she has done a similar thing with me a few times, ie, gone ballistic over nothing. They both were similar when it happened, like a viscious animal; you can't talk to anyone when they're like that. Each time it seemed to have nothing to do with me at all. However, it's upsetting.
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sammy
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Rumi, I' so sorry this is happening to you.
(Sorry I've been slow to respond, I've been thinking of you and praying for you... Mom's cancer came back, she had surgery, was in the ICU for a week, she finally came home, then got a pulmonary embolism, so back to the ICU another week...She's finally home now, hopefully for good...)
GOOD IV therapy/ Port experienced nurses are hard to find. My nurse (who I consider my friend) switched infusion/ pharmacy companies. So I went through 9 months of hell trying to find a decent nurse. They all treated me horribly, made it clear that they did not want to do my infusions.
My IVIV takes 6.5 hours to run with an additional hour of set up, drawing labs, brief assessment, etc... They didn't like me because my infusions were long. Said they got more money for short visits.
So I decided to stay with Walgreens infusion pharmacy and called my old nurse, asked where she was working, thankfully my insurance was accepted, so I switched my nursing care to her new company. I'm so glad to have her back!
My Immunologist has given me permission to access my own port. Before I started, he wanted me to learn under the IV therapy nurses at Cincinnati Children's. They have much higher standards of care (including sterile technique) than nurses at adult hospitals or oncology clinics (often only clean technique!).
This way my doctor can rest assured that my port care is done with impecible sterile technique. I'm more comfortable doing it myself too. I have a difficult time trusting others, even my nurse friend. They just are not as careful and conscientious as I like and need.
I've seen some posts on YouTube that down right frightened me as people used poor technique to "teach" others to access their ports. I had the same feeling while reading that online IV guide book for Lyme patients. Scary bad advice!
If you cannot see well, or if you have much neuropathy & such in your fingers, do not have a room with adequate lighting and a good mirror that you can stand close to, then I would not recommend trying to access your port yourself. I would learn the proper sterile technique to make sure that your nurse is always following it. Be picky, be annal, be OCD, it's your port! Protect it!
As for infusions, I do infuse my own IV antibiotics twice daily.
Due to the risk of complications, mainly anaphylaxis, doctors will not authorize Infusions of IVIG on our own here in America. I do have Epi, but still, I feel better with someone in the house with me during my IVIG infusion.
SCIG (sub-Q) Ig is done at home by patients once weekly without a nurse. It is safer though because the dose is lower and absorbed more slowly by the body tissues. IVIG goes directly into the veins and is circulated quickly. So severe complications can arise quickly.
Rumi, if your nurse does not come back, can you switch nursing companies. We have several here where I live so I imagine you have the same or more.
If you like your infusion pharmacy, you should be able to keep it. I call and order my supplies a few days before I need them once weekly. I speak with a pharmacist, some companies have customer service representatives who help take your order. Rumi, instead of relying on your nurse to remember what you need, take charge and order the supplies that you need yourself. (I know, we already have enough on our plates but running out of essentials is not a good situation to find yourself in...)
Keep a list of all the supplies that you use weekly or per infusion. This will help you keep organized and make your ordering easier. As you are aware, it is always good to have a few extra of each essential item.
If your port is still malfunctioning, you still might want to consider seeing the surgeon to find out why it's acting up and get it fixed.
You may also get a prescription to be "evaluated & treated" by the IV therapy nurses at a nearby hospital. They are trained in assessing ports, they will also know if you need any tests.
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
sammy,
Oh, no!!! I am so, so sorry to hear about your mother! (This should be a separate post under General, as you and your mom could really use a lot of support and prayers]. This has got to be just heart-breaking. I will call you. I am terrible about getting back to people lately, but I have been meaning to call you.
I called the surgeon's office and reached the surgeon today on the phone. He is so great! Very competent, personable, and down to earth. He said exactly what I thought: it is the fibrin sheath that is the problem. He said the only fix is either to replace the port, or to nurse it along with CathFlo as needed with long dwell times.
He understood about Complex Regional Pain Syndrome and why I would not want any surgery now. It's not "pinched-off syndrome," because CathFlo always helps a lot. Plus, the line is over my clavicle and visible, not where it could get pinched off.
I figured that it would not be possible in the US to do my own IVIG infusion, although I may try. I don't see where I'd get the meds & supplies, since the infusion company wouldn't agree to that. Plus, the doctor would likely be wary, mainly because if anything went wrong, it would be on his head. Not that anything is likely to happen, but still.
I will relearn how to access myself, however, if possible, as that would make things much easier. My usual nurse is absolutely perfect about accessing me always, and also about sterile technique, etc. This is the one that blew up at me. I think that her anger at me speaking up to her will likely blow over.
But I will have to nicely insist on long dwell times whenever I need CathFlo. And will have to get a good back-up nurse.
I can't believe what you went through with IVIG nurses---horrible!! I have been through way too many horror stories in the past, also. I know EXACTLY what should and shouldn't be done, and was always a hawk-eye, speaking up as needed. But the stuff some of the "nurses" did would curl your hair!
Yes, I'll have to take charge of ordering the supplies, or at least in addition to what she does. I've worked with her a very long time, and that had never happened before. I think she got lazy! Or just wanted it to be simple and easy.
My love and prayers to you and your mom. What a difficult road you both have had! I know that one. Only someone who has been through this much as those of us here have can understand.
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
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Member # 15091
posted
Update:
I heard from the nursing supervisor at the infusion company today. Unbelievable, my nurse told them via email immediately (2 1/2 weeks ago) that she wouldn't work with me anymore. And they didn't let me know all this time!! That's outrageous that they didn't let me know.
We had been working together for 2 1/2 years 3-4 times per month for 5 or more hours per time with no problems at all, except for the 3 times she blew up at me. Which is a pretty big except; this last one is terrible.
She also lied to them saying that she would be out of the country, so they couldn't call her, only email her. She had told me repeatedly that she was going to Utah.
She also lied to me when she blew up at me, saying that she had another patient right after me, and that she had told me that previously, which she hadn't. The supervisor looked it up, she took that patient on 2 days AFTER we made our plan of action, and after she supposedly told me that she had someone after me!
She clearly didn't care about my situation, didn't want to follow the plan to do the best possible to save my port. She kept saying that lots of her patients' ports only last a year, which means, if she thinks they need a new port, because it isn't working well, that's it! Crazy.
So now I'm supposed to resume treatment next week, but had no other nurse. They've found "a good port nurse," that they want to use. Maybe he's good with ports, but the number of times this company has told me that, and they were horrific is unreal! They are 1/2 way across the country, and don't see these nurses.
There are nursing supervisors closer here, but they have NOT done their job repeatedly in the past. He's also new to IVIG. As she spoke, I did feel better about it, but afterwards realized that I'm still not happy that they didn't let me know right away. In that case, I was
going to really try to find the nurse that taught me to access myself before, if possible, and learn to do it myself, in spite of the issues, which does include bad neuropathy in my hands.
I sent an email after the call outlining what I needed them to do before I am willing to have him just come, ie, train him in person, watch him do ports & IVIG, and then come to the first visit and watch for the first part. I'm not backing down on that. They won't be able to do it in time for next week, I'm sure. Tough.
I also am simultaneously going to try to find that nurse. I've had it with being dependent on bad nurses!
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me
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Member # 45475
posted
Wow, Rumigirl. I'm so sorry. This is outrageous. I hope things calm down for you very soon.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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